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05 Apr 2004 Well, I had decided that there was not a whole lot else to say on this website, but today I was sent a shockwave and so I have decided to write. I'm not sure if y'all remember a little guy named Austin Price that went through transplant when Tommy was at Duke as well. Austin has been doing pretty well as life goes after transplant. A success I would say. However, now it was just revealed that his older brother, Cole, has t-cell Acute Lymphocytic Leukemia (ALL). Please pray for this family. (www.caringbridge.org/nc/austinprice ). There lives have been drastically changed. They need your support and your love. They need your prayers to the Father. Difficult times are always easier to get through when you know that you have the support of others that care for you. Even if you don't know them personally. So please say a pray each day, several a day for their strength as a family, their strength individually and their strength to accept the will of God, whatever that may be. Thank you for your love. " But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted but not forsaken; struck down, but not destroyed--...Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory..." Romans 5: 7-9 and 16-17. Amen! 23 Feb 2004 Yes, it's been quite a long time since I've been on this website. I'm just not sure what to say anymore. We are trying our best to live through the pain of losing Tommy. It will be with us always. It's not something that "time will heal". It's not something that can be "gotten over". It's not something that can be "replaced". It's forever and always while we live. The challenge is to understand that in our minds and to find how to best cope with it. Our source of comfort and understanding through all of this has been the Word of God, Christ Jesus. We need to prepare ourselves, our souls, for eternity. Because in Heaven, "...God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying; and there shall be no more pain, for the former things have passed away....He who overcomes shall inherit all things, and I will be his God and he shall be My son. But the cowardly, unbelieving, abominable, murderers, sexually immoral, sorcerers, idolaters, and all liars shall have their part in the lake which burns with fire and brimstone, which is the second death." Revelation 21:4,7-8.
02 Sept 2003 I know we've been promising y'all pictures for a while now, so now, finally, there are a couple more pictures in the photo album of Tommy's memorial stone and of an airplane donated to the VA Aviation Museum in memory of Tommy by my husband and his brother. I have been busy working almost everyday lately, since I've changed positions in the hospital I work at; so now I'm on "orientation"! Ha! I was dying last week...I had to get up at 4am every morning to get to work by 6am. I haven't had to work every single day in about 10 years!!! I made it, although by mid-week I was feeling almost physically ill. It is better this week, since I don't have to get in until 9am, and there are only 4 days in this week anyhow!!!! (Yippee!). Tom and I spent the long weekend in Tennessee with his parents, now it's back to the "ol' grind"!!!! There's a song by a Christian group, Acappella, called "TIL HE COMES", that has lyrics that ring 'round in my head....they go..."There's nothin' in this world worth turnin' around to see, My eyes are on the prize, that's awaitin' me by and by, and I'm a gonna keep on workin' til He comes, til He comes..." We are missing Tommy much. It's good to read your notes as some of you still remember us and send kind words our way. Thanks so much. We still need your prayers. Keep all the families of transplant in your hearts and prayers. " Blessed is the man who walks not in the counsel of the ungodly, Nor stands in the path of sinners, Nor sits in the seat of the scornful; But his delight is in the law of the Lord, And in His law he meditates day and night. He shall be like a tree Planted by the rivers of water, That brings forth its fruit in its season, Whose leaf also shall not wither; And whatever he does shall prosper." Psalm 1: 1-3. Amen.
06 July 2003 Hi all! Happy belated 4th of July!! We spent the whole day "mooching" off of relatives and friends, the food was great and so was the company! But best of all, I didn't have to cook! hahahaha...We are at the doorstep of our summer VBS (vacation Bible school). The past month has been especially intense. My husband is a very good organizer, thankfully, but also a perfectionist-type...you know, typical engineer. The work has been done and now we pray that it comes to fruition. Our theme this year is taken from a "Mission Impossible" vein. It is very clever, whoever thought this up. The actual take on it is "Mission: (all things are) Possible (with God's help!)". We will have a skit every night to start the lessons with a Chief Director and Secret Agent 008. All students (or "recruits") are asked to help defeat enemy operatives that work for Satan. They are given names like "Izzy A. Liar", "Willie B. Leeve", "Lois I. Kengo", " Ida Stracted", and "Ima Quitter". It promises to be a very interesting VBS. Please pray for our success in reaching children and adults who may not know Christ. By the way, my new name is "Stencil Girl" since I have gotten very wrapped up in creative signage. Perhaps I was just overcome by the fumes from the permanent markers! That could be it! On another front...Tom and I got to spend a couple of days down at the Outer Banks of North Carolina in June with a couple of friends. Unfortunately, I had gotten sick the day before, spiking 102 fevers and having some amazing chills and body aches. Well, I decided we were not going to miss the opportunity, so I took some Motrin Thursday, managed to pack, and we headed out to the beach!!!!! I survived most of the day Thursday but by that night the fever, chills and aches were back. Luckily I was "cured" by Friday!!!! We definitely did not want to go back home so quickly....it was soooooooooo wonderful! I am hoping to get some new pictures on this website AFTER VBS because it will be totally impossible to do it now. Tom has been "spinning" morning, noon, and night. So, I promise we will get pics to you soon. Also, the bereavement program at Duke had asked us to donate some material that would remind us of Tommy, so they could have an artist make a quilt of all the pieces they would collect. Of course, the most prominent item we could imagine sending them was something with Scooby Doo on it, so that we did. They have just sent us several post-card like pictures with the finished quilt on it. It looks like they cut up each piece of material into several smaller pieces to make into several squares. So, Scooby is cut up, but most of him is on one piece that I can recognize. I think we would have to see the quilt in person to recognize the rest of them. It is supposed to be hanging in Duke hospital North, by the cafeteria. Sounds like little Alex Martini is doing well post-transplant!!! Yea!!! That family has been through a whole lot of stuff! It is amazing that they are not bald (the parents, that is!). Well, it's past my bedtime and Monday brings VBS!!! We're pretty excited! Tommy would have LOVED to have been a "secret agent" but I guess he is in his own way now. We miss him sooooooooooooooooooooooooooooooooooooooooo much! God is our only strength, our only comfort. It is only through His Son, Jesus, that we will find our way home and be with Tommy again. Thanks for thinking of us and please continue to pray for us and for all the children of transplant and their families. God be with you! " So he said, ' While the child was still alive, I fasted and wept; for I said, "Who can tell whether the Lord will be gracious to me, that the child may live?" But now he is dead; why should I fast? Can I bring him back again? I shall go to him, but he shall not return to me.' " 2 Samuel 12: 22-23. Amen. " The eye of him who sees me will see me no more; while your eyes are upon me, I shall no longer be. As the cloud disappears and vanishes away, so he who goes down to the grave does not come up. He shall never return to his house, nor shall his place know him anymore." Job 7: 8-10. Amen. 13 May 2003 I know it has been a "gazillion" days since I've written last; time does slip away. We have been busy trying to get taxes done, get the house refinanced, get the house fixed up a bit and still work on our VBS among other things. Tom has been very busy at work. We took a long weekend and went to Atlanta again to visit his brother and his family. It was good to have a break from the usual routine. It had been a very long time since I had flown and I was kind of nervous, hoping I wouldn't have to "slug" anybody trying to body search me!!! hahahahaha....Richmond was not a problem, but Atlanta was another "animal" all together. Tom actually was the one who had to get body searched on the return trip. The eyelets on his shoes, the button on his jeans and the clip on his eyeglass case set him off. Amazing. I was wearing gold jewelry and nothing beeped when I went through. Kind of strange. I think they want to search as many men as possible. The highlight of our trip was going to an Atlanta Braves baseball game. The weather was hot and humid most of our visit, except when we went to the game. It decided to be cold, windy and rainy. This resulted in almost a 2 hour delay of the game, but fortunately it restarted and, most of all, the Braves WON!!! We were able to see John Smoltz close out the game!! We also got to the game early for batting practice trying to catch a baseball and/or an autograph. Didn't get an autograph but did end up with a baseball!!!! The ball thrown by one of the players into the stands where we were standing, bounced over the head of our niece, Melissa, and she plucked it out of the seat behind her!!! It was great! What was even greater was that she gave US the ball!!!! Yippee!!!!!! The week before we left for Atlanta, we traveled to Duke for their 3rd annual Rainbow of Heroes Walk with donations going to the family support fund. We ran into Dr. Kurtzberg, of course, and Sue, and Mary, Tommy's primary nurse on the BMT unit. We also ran into some parents we knew or who knew us in some way. It was a good thing to go to. We even ran into the Martinis who had just gotten out of the hospital that very day!!! Little Alex looked pretty tired and baby Nick was as cute as could be!!! Will try to get pictures of that event up on this website at a later date (watch out Khalita!!). We still miss our Buckaroo and always will. Haven't done much to his room, although I did get up some nerve to give away some smaller sized clothes and some toys he didn't much care for. Guess it's a bit of a start, but it's a hard task to try to do, let alone get through. Tommy's memorial stone finally came in and is installed now!!!! Can you believe it??!!! We will also have to get pictures up here of that also, when Tom has time to sit down for a few minutes; maybe later this weekend. We're also starting a softball team at our congregation, so that's become it's own "monster". Please continue to pray for the children of transplant, their parents, families, and those who care for them. It's a difficult road. " 'I am the Alpha and the Omega, the Beginning and the End,' says the Lord, 'who is and who was and who is to come, the Almighty.' " Revelation 1:8. Amen! " 'And behold, I am coming quickly, and My reward is with Me, to give to every one according to his work. I am the Alpha and the Omega, the Beginning and the End, The First and the Last.' Blessed are those who do His commandments, that they may have the right to the tree of life, and may enter through the gates into the city. " Revelation 22:12-14. Amen!
15 Mar 2003 Hi all! It has been a busy week and weekend for us so far. We have been keeping busy with church-related activities. Tom is in the early stages of planning this year's VBS (Vacation Bible School) and I just got finished helping with a "Spiritual Gifts" workshop for our congregation and others in the area. Anyway, we noted that the Alex Martini family has headed off to Duke again for more treatment. Their website is www.alexupdate.com if you don't know it already. Please continue to pray for them. The journey is terribly long and not without risk. Also remember our friends Jenna, Maddy, Michelle, Austin & Julia who continue to do well. There are many others out there who face difficult decisions regarding transplantation, so remember them also in your prayers, as well as their families. There is a "Rainbow of Heroes Walk" on Saturday May 3rd to benefit the PBMT family support program at Duke. Anyone wanting to make a contribution to a worthy cause can do so through their website at: www.cancer.duke.edu/PBMT/support.asp or www.cancer.duke.edu/PBMT/fundraising/rainbow.asp. If the Lord is willing, we hope to make an appearance there this year, in honor of our son, Tommy, and contribute to his memory. We are anxiously awaiting Spring and being teased with warm, sunny days intermittently. May God give you grace for your day and plant seeds of love in your heart that will bloom for His glory! Thanks for your love! " Another parable He put forth to them saying: ' The kingdom of heaven is like a mustard seed, which a man took and sowed in his field, which indeed is the least of all the seeds; but when it is grown it is greater than the herbs and becomes a tree, so that the birds of the air come and nest in its branches.' " Matthew 13: 31-32. Amen!
14 Feb 2003 Happy Valentine's Day!!! Today is a special day for us. We are going to see a friend of ours graduate from Police Academy training. It has been a dream of his for some years and he has finally achieved that goal! This past Tuesday we visited our friends at Duke for the first time since our Tommy died. We, of course, had to go on a "clinic" day. Dr. Kurtzberg's Tuesday clinic days were always loaded with a lot of waiting because there were always a lot of children to be seen. It seems things have not changed any, except for the fact that they are even busier than before. Somehow they see an average of 30-34 children in a 12 hour span. Somehow. We were happy to discover that Tuesday at clinic is still "Scooby Doo" day. The staff wear Scooby scrubs and some of the kids wear Scooby shirts. Tommy always had to wear a Scooby shirt. It almost got to where he wouldn't wear anything but a Scooby shirt. So, this is his little legacy left behind; it was the best part of the day. We were able to visit with most of the staff that we had come to know over the past three years. We visited the clinic, the PBMT unit in the hospital, and the PBMT offices at Duke's North Pavilion. It was a special day for us and it couldn't have been better, except unless if we had been there with Tommy. We are still waiting for his memorial stone to come back for the second time. It didn't get picked up until the second week in January. Hopefully it will be done correctly this time around. As of this writing, we're "hunkering down" waiting for some nasty winter storm to bear down upon us again. This has been one long winter in Virginia. Of course, they are never as long as a Michigan winter, but I have been climatized and enjoy the coming of spring so much sooner than I ever could in Michigan. At least the days have started to grow longer now and it doesn't get dark so early. The robins have already come in in quite a large number and we think they are crazy because winter seems to still be here. Perhaps this will be the last blow of ol' man Winter this season! We can only hope the birds know more than we do!!! As of this writing the Martini family was experiencing a healthy run. Please continue to pray for them and for all those children who continue to need transplants. We would also like to mention that the pediatric BMT program at Duke, along with the American Cancer Society, is trying to raise funds for "Hope Lodge", a home away from home, totally free of any expense, for the families of Duke's pediatric BMT program to live at while in Durham. Tom and I were blessed with some coverage from our health insurance that paid for most of our lodging expenses, but most families do not have such coverage. There is an enormous amount of stress placed on families trying to balance expenses in two different places while dealing with such catastrophic illness. If anyone would like to learn more about this project you can find it at: www.cancer.duke.edu/pbmt. God bless you all. "For this is the love of God, that we keep His commandments. And His commandments are not burdensome. For whatever is born of God overcomes the world. And this is the victory that has overcome the world--our faith." 1 John 5:3-4. Amen!! 31 Dec 2002 MERRY CHRISTMAS AND HAPPY NEW YEAR TO ALL!!! We hope your new year is filled with happiness and health for you and those you love. Tom and I headed south to Atlanta for the Christmas holiday. It was a 9-10 hour drive but it was good to do something different. We hadn't been to Atlanta for about 6 years. One of Tom's brother's and two of his nieces live down there. Tom's parents were there and his other brother and sister-in-law, plus "Rosie" (the Yorkie) showed up too. It was a good time had by all. Tom's brother, Harry, is addicted to new technology and he infected his brother Howard as well, especially with his "X-Box" games and TiVo. Howard will soon have his very own X-Box in his house. One of Tom's niece's has a 10 month old little girl named Abigail. She is so sweet and such a good baby! One day we crammed 7 of us into our van and headed to Cleveland GA where Tom and I adopted a new baby, named Russell Radcliff at the Babyland General Hospital. He is so cute! He has blue eyes and no hair. He was born a preemie, so we need to take extra special care of him. We also saw a couple of new babies being born while we were there! It was pretty expensive to adopt Russell but he was worth it! In case I'm confusing you, Russell is an original cabbage patch doll and Babyland GH is the only place to buy an original cloth faced doll. We did play a trick on a friend of ours at church about adopting a baby and he was pretty engrossed in the whole scenario until Tom spilled the beans. We fooled him good! Now he promises to get back at us! We are thankful for time with family but we still have a hole in our hearts from missing Tommy so very, very much. It is a wound that will never heal completely. I, unfortunately, became sick the day before we were supposed to leave for Atlanta. When we got there on Tuesday, I could barely whisper, something the Burnette brothers found to be an early Christmas present! Since I wasn't improving any after returning home, I went to a "doc in a box" and found out I have strep throat! What a surprise! I must say I've never had strep before and thought I'd feel a lot worse and have a high temp, but nothing of the sort. That's why I thought I could shake it, but I couldn't. I am finally feeling some better, although the coughing and hacking is a bit annoying. Thank you for continuing to check up on us and for praying for us. We are so grateful. (Two new pictures at end of the Photo Album section)! " 'Do not labor for the food which perishes, but for the food which endures to everlasting life, which the Son of Man will give you, because God the Father has set His seal on Him....For the bread of God is He who comes down from heaven and gives life to the world.....I am the bread of life. He who comes to Me shall never hunger, and he who believes in Me shall never thirst.' " John 6: 27,33,35. Amen! 20 Dec 2002 Hello everyone! We hope you all are busy with the holiday rush. Tom and I have tried to stay busy, but the holidays have brought with them an "emotional storm", if you will. We are hoping to spend Christmas with Tom's family near Atlanta this year. We have not been down there for years. The TV in our van will be silent on the way down. The favorite Christmas songs that Tommy enjoyed so much will be difficult to listen to. There is no "joy" in our holidays this year. There still is thankfulness, however, in the life that was and still is Tommy. Even these words are difficult to write without having a "meltdown". Our friend, "Miss Sue", called the other night. She has been working very hard as usual. She told us a story about how one of the children at Duke asked Dr. Kurtzberg if December 25th is really the day Jesus was born. Now, normally there's nothing funny in that statement, except when you know that Dr. Kurtzberg is Jewish!!! I think she got away with that one by saying something like "That's how the story goes"!!! I would have loved to have seen her get out of that one, but she does have a good way with kids. Anyway, hearing from Sue was a pleasant surprise, and a good birthday surprise that made my day. We were also anticipating getting Tommy's memorial stone in place at the cemetery on Thursday. That hit a snag when the man getting ready to install it noticed a flaw in one of the letters. It was rather obvious, so they did not install it. In fact, it has to be sent back to the company in Georgia to have it totally remade! It took us two months to get this one, I guess it'll be another couple of months for another one to show up. The rest of it was beautiful, though, and once it gets done right it'll be so very fitting for Tommy. I will get Tom to add a picture in the photo album, so y'all can see how very beautiful it is. Thank you all for bringing so very much to our lives. We hope Tommy gave you all a little piece of his life too. Please continue to pray for little Alex Martini as she continues to fight relapsing leukemia after her first cord blood transplant. She has a new baby brother, as well, who was born emergently last week and is still very tiny. Alex's webpage is: www.alexupdate.com. Merry Christmas! " 'Behold, a virgin shall be with child, and bear a Son, and they shall call His name Immanuel,' which is translated, 'God with us.' " Matthew 1: 23. Amen! 26 Nov 2002 Thank you for visiting Tommy's website. Lately, the days and nights are harder to endure. Faith is a great comforter, but it does not take away the pain of missing one you love. We are busy with everyday tasks, but it doesn't help to come home from work and not find an eager face coming up to greet us, waiting for a "surprise". Our good friend, "Mr. Guy", from Tommy's school, presented us with a CD of Tommy's life from the pictures we gave him and then they (teachers & therapists) added their own reflections. It's beautiful. I cannot watch it without sobbing. I don't know what good it does to cry, but I find myself doing it more than I want to. Anything seems to set me off these days. It has been difficult getting through Nana's birthday and Tom's as well, recently. Tommy was always the one to help blow out the candles on the cake! When he was younger, he couldn't figure out how to blow air out of his mouth, so he'd blow out his nose. It was so silly. And now the holidays are upon us. These will be tough to get through as well. Tom has uploaded some of the pictures from the funeral of our "honorary firefighter" at the end of the "photos" page. Thank you for your notes of encouragement that you leave for us. God has blessed us abundantly. We pray that God will bless you as well. " Then Job arose and tore his robe and shaved his head, and he fell to the ground and worshipped. And he said: 'Naked I came from my mother's womb, And naked I shall return there. The Lord gave, and the Lord has taken away; Blessed be the name of the Lord.' In all this Job did not sin nor charge God with wrong. " Job 1: 20-22. Amen! 24 Oct 2002 We would like to ask you all to pray for Alex Martini and her family. She had a transplant back in 1999, for her leukemia, and she has had several relapses since then over the years. She is such a sweet child. She continues to struggle. We have mentioned her here before on Tommy's website. Her family is in a bind with their insurance company who does not want to pay for another transplant. Alex's story is found at: www.alexupdate.com. We were also shocked to find out that little Jonathan Powell, who struggled with neuroblastoma, also died this past week. If you would like to leave a note of comfort, his web address is: www.pilink.com/wv/jonpowell/index.htm. Tom and I continue to try to cope with our loss. The days and nights seem so very long sometime, without Tommy. We miss his smile and his laugh. We miss tucking him in bed at night and getting everything "just right" (his bedtime routine had gotten rather extravagant!). We miss saying prayers with him and reading his favorite "Little Bear" stories with him. We miss his hugs and his kisses. We miss watching "TT" (TV) with him and hearing him tell us to "sit down!" to watch it with him! We are grieved that such an essential part of our being was torn away from us. It is so painful. I do not think the pain will ever leave us. It will just take on another form, but it will still be there...forever. We cannot run from it or hide from it, because it is always there with us. We will have to learn to live with it and grow with it and continue to use it to give God the glory that He has created us for. It is amazing how one little boy's life has affected so very many lives in such a short amount of time. Tom and I will have plenty of "catch up" work to do in our lives to try to accomplish just a little of what Tommy has done in his. I baked Tommy's favorite "train" cookies last week and took them over to the fire station. It was good timing, they were just about to eat lunch. I was told that they did not last long, either. Tommy loved making cut-out sugar cookies with a train cookie cutter. He enjoyed spooning out the flour to put on the dough and flattening the dough with a rolling pin, but after a few cookies, he would be done and I'd be left to finish! It was always sad for me to know that he couldn't actually eat the fruits of his labor! We would just tell him that one day he would be able to eat them. I think he was happy just to help! He enjoyed the little things in life that some of us would just brush off as nothing special. We were also blessed by our friends, Christina & her husband Chris, who presented us with an "Honorary Firefighter" certificate (for Tommy) signed by the local fire chief, framed and matted, signed by all the firefighters at the station, emblazoned with official Fire & EMS patch and a picture of the Fire engine that was at the funeral. It's beautiful. Thank you, Christina and Chris!! We hope to still get pictures on this web site one day of Tommy's final ride. It was pretty impressive. We'd also like to thank all of you who have supported us through your donations to the "Tommy Fund". You have made it possible for us to see the "light at the end of the tunnel" (funeral expenses). Thank you mostly for your prayers, however. They have been our strength during our time of greatest need. God's blessings be yours each day! " But you, beloved, building yourselves up on your most holy faith, praying in the Holy Spirit, keep yourselves in the love of God, looking for the mercy of our Lord Jesus Christ unto eternal life." Jude 20, 21. Amen! 05 Oct 2002 It has been a surreal two weeks since Tommy died. Life, of course, is not the same. It has been easy to "wind down" from having been wound so tight for the past several years. But it is oddly strange. Tom and I would still much rather be "wound tight", even today, if it meant our Buckaroo was still alive and home with us. We can actually get real consecutive hours of sleep now but there is a twinge of guilt attached to that. I'm not sure if you could call it "guilt" but it just doesn't seem right. Again, we'd take the sleeplessness of our past to have Tommy in our present and future. It would be a small price to pay. We'd like to thank so many of you personally for the sympathies you've extended to us. They have meant so much. We are thankful to God for you, for the love you've shown us through such difficult days. Some of you have been with us through three entire transplants and all the problems we've encountered along the way. You've rallied us when we were down and encouraged us more when we were on a roll. Thank you for that. We are in the process of designing a fitting memorial stone for Tommy's gravesite. It will be in the shape of a single heart and have his picture on it. It can take six weeks or more to have it completed and then installed. We have found out that the cost of memorials is very expensive, ludicrous even. We hopefully will be posting some photos of the firefighters and the engine that took Tommy from the church building to the cemetery pretty soon. I am waiting to see if the fire department photos come out on their website soon or if I can get a hold of them. The principle at Tommy's elementary school also wrote a nice follow up commentary in the local paper here (see below). Thank you all again for everything you've done for us and for Tommy. You give honor to his name and we give thanks to God our Father for you.
" But concerning the times and the seasons, brethren, you have no need that I should write to you. For you yourselves know perfectly that the day of the Lord so comes as a thief in the night....Therefore let us not sleep, as others do, but let us watch and be sober...But let us who are of the day be sober, putting on the breastplate of faith and love, and as a helmet the hope of salvation. For God did not appoint us to wrath, but to obtain salvation through our Lord Jesus Christ, who died for us, that whether we wake or sleep, we should live together with Him." 1 Thessalonians 5: 1, 2, 6, 8-10. Amen! 25 Sep 2002 Today, our Buckaroo, Tommy, was physically laid to rest. Family and good friends from near and far came to be with us. Remarks made at the service were so appropriate, so fitting, for our son. Life will never be the same without him here physically, but he remains always with us. We have comfort in knowing his young, innocent soul is resting in Paradise with the faithful. As a fitting tribute to our hero, Tommy was made an honorary firefighter by the Colonial Heights Fire Department today. They gave him a Hero's farewell. His casket was raised high upon Engine 2 and escorted by Firefighters in dress uniform and by uniformed police officers all the way to the cemetery from the church building. It was an honor our hearts will hold dear all the days of our lives. As we passed through the city, more fire trucks, EMS and police personnel stood at attention as Tommy passed by, high atop Engine 2. Then we laid him to rest upon a gentle knoll and knew we had tried to give him the best we could, everyday. But we still miss him. We miss the busy-ness of his life, of his everyday world. It was our world too but now it's incomplete. We'd like to share a poem with you that one of our friends wrote and gave to us last night:
It has been a long, difficult week, especially today. Happy Birthday, sweet pea. Mama and Daddy will always love you! Thank you all for your much needed prayers, the comfort of your notes & cards, and your hugs. We are grateful. " For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ, who will transform our lowly body that it may be conformed to His glorious body, according to the working by which He is able even to subdue all things to Himself. " Philippians 3: 20-21. Amen!
21 Sep 2002 Funeral services for Tommy will be at 2:00pm, Wed 25 Sep at the Edgehill Church of Christ, 25609 Grant Ave., Petersburg, VA. Internment will follow in Sunset Memorial Park in Chester, VA. Visitation will be on Tue 24 Sep from 7:00-8:30pm at E. Alvin Small Funeral Home, 2033 Boulevard, Colonial Heights, VA. In lieu of flowers, donations made payable to the "Tommy Burnette Fund," care of the Bank of America, 1921 Boulevard, Colonial Heights, VA 23834, would be greatly appreciated. We are so thankful for the tremendous outpouring of love and support we have received during this time of our loss. You have lifted us up in your love and the love that is Tommy and we are grateful. We are deeply saddened by the loss of our son, but your love has made our pain a little more bearable. Tommy is gone from us physically but he will never be gone from our hearts. God bless you all abundantly as you have blessed us with your comforting words, hugs, cards, & love. " Blessed are those who mourn, for they shall be comforted...Blessed are the merciful, for they shall obtain mercy. Blessed are the pure in heart, for they shall see God..." Matthew 5: 4,7,8. Amen! 19 Sep 2002 The soul that we named Thomas Emmanuel Burnette II, born on September 25, 1994, went home to his Creator this day, September 19, 2002 at 5:45pm. No words can convey our loss. No amount of tears will soothe our hearts. Our hope is in the Lord Jesus, that we may one day be with Him, and Tommy, in Paradise. We are grateful to you all for your prayers, love and devotion to Tommy and to us. We won't know what to do without him. " When Jesus heard that, He said, 'This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it'......Jesus said to her, ' I am the ressurrection and the life. He who believes in Me, though he may die, he shall live. And whoever lives and believes in Me shall never die. Do you believe this? ' " John 11: 4, 25, 26. AMEN! 18 Sep 2002 Last night as I was working on Tommy's web update, our computer monitor on our "new" laptop decided to flicker and then turn totally black. We could not get it to come back. Today we have been able to borrow a video monitor from the good folks from bone marrow and connect it externally as a temporary fix. Unfortunately this monitor is very blurry and shaky, so we are having a difficult time reading what we write. You will have to pardon any misspelled words because we cannot see them that well. Tom was going to go buy one since they are so cheap but free is still better! Dr. Kurtzberg and Sue stopped by last night. She thought his liver felt hard. We are waiting for another abdominal ultrasound, but I wonder if it's even worth it. Tommy has had some pain ever since she palpated his abdomen. Tom's parents and brother/ sister-in-law went back to Richmond yesterday afternoon. We are in a "holding pattern" here. There are no great changes from day to day. We are waiting for the doctor to round yet today on Tommy. He did receive a unit of platelets last night and a unit of blood this morning. His "coagulopathy" icontinues. I am not sure there will be much new to discuss today. We will see.
17 Sep 2002 Tommy's condition has not improved any, it continues to decline...slowly. He still opens his eyes occasionally and moans or grunts about things. Dr. Mustafa told us that as his liver continues to fail he will eventually become comatose from all the toxic entities in his bloodstream that are not being filtered out by the liver. Tom asked hard questions this afternoon. He wants to make sure we are doing everything we can to give Tommy a chance at life. The difficulty is that his liver is failing, his lungs are "inflammed" (infected) and his kidneys are on the edge of becoming nonfunctional from having been diuresed so much (fluid removed). We cannot give him aggressive replacement IV fluid therapy (which the kidneys need) because he will develop pulmonary edema from leaky blood vessels there. If we add any more immunosuppression to try to fight the liver GVHD we risk killing him from the infection that would run rampant in his lungs. Dr. Mustafa also feels that he is getting the maximum amount of immunosuppression and his liver is still failing because GVHD continues to attack it and make it nonfunctional, like cirrhosis of the liver. Tommy doesn't deserve to die this way. It is not an easy sight to see your son turn ugly shades of yellow with bloody splotches and bruises all over his body. He is so very thin and frail. We will continue to keep him as happy and as comfortable as we can. The staff here on 5200 have been very supportive. Thank you Lord for your mercy. " My soul clings to the dust; Revive me according to Your word. I have declared my ways, and You answered me; Teach me Your statutes. Make me understand the way of Your precepts; so shall I meditate on Your wondrous works. My soul melts from heaviness; Strengthen me according to Your word. " Psalm 119: 25-28. Amen!
16 Sep 2002 What to say?! Tommy's life lingers on. A good thing. It gives us time to be with him. It gives us time to try to accept what is going on with him. It gives us time to keep him as comfortable as we possibly can. He sat up on the edge of the bed last night and I think it felt good to him. We are trying to decrease his oxygen requirements. His lungs sound fairly good but his respirations are still rapid and his work of breathing still increased. We are waiting for Tom's parents to arrive today. Tommy always liked it when Grandpa Eldredge somehow got money to come loose out of Tommy's pants. Tommy had a pretty well-rested night. I'm not sure how much sleep he actually gets because he always seems to answer when you talk to him. I think he just cat-naps but I don't know for sure. ---Today was a pretty noisy day on 5200. Two special children were discharged to outpatient status for the rest of their stay in Durham. Then Child Life had planned activities on the floor that made things quite boisterous. Quite a few children participated. I always wished Tommy could get involved in that kind of stuff. Tom's parents arrived along with his brother and sister-in-law. Tommy, I believe, enjoyed them being here. Grandma Boots read Tommy his favorite "Little Bear" stories. Tommy knows them by heart and could read from them because he knew them so well. I bet he was saying the words in his head as Grandma read to him. Then Grandpa Eldredge asked Tommy to give him a salute like he used to do and sure enough Tommy, weak as he is, got that hand up there to his head and saluted Grandpa! Unfortunately, Tommy's liver function tests continue to climb and he is becoming more jaundiced. He looks comfortable however and we hope to keep him that way. It is special to us that so many people whom Tommy met during his three years here have stopped by or called to check up on him. We appreciate that very much. It warms our hearts to know that other people love Tommy almost as much as we do! We are still finding it inconceivable that this is happening but deep down in our hearts, in our minds, we have that blessed assurance through Christ Jesus, our Savior, that Tommy will be free from pain, from "boo-boos", and from the misery of all the chronic problems he has dealt with for these past eight years, when his soul returns to the Lord. It is only the promise of everlasting life that can comfort us at this time in our lives and makes it even more imperative that we, ourselves, strive for the goal of eternal salvation in our own lives, so that one day we may be together with him in paradise. We hope and pray that you too may have the peace of Christ in your life. " Truly my soul silently waits for God; From Him comes my salvation. He only is my rock and my salvation; He is my defense; I shall not be greatly moved...My soul, wait silently for God alone. For my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved. In God is my salvation and my glory; The rock of my strength, and my refuge, is in God. Trust in Him at all times, you people; Pour out your heart before Him; God is a refuge for us. " Psalm 62: 1,2, 5-8. Amen!
14 Sep 2002 Tommy has had a decent day. They aggressively removed fluid from his lungs/body with IV drugs and by this morning he had 1.5 liters out over what he had had in. They felt he still had a couple more liters to get rid of but they don't want to pull it off so very fast. By this morning Tommy was asking Tom to sit up, so after a bit of maneuvering with IV lines & monitoring equipment, Tommy was up in Daddy's lap in the chair. He is still pretty lethargic and weak but he was making eye contact and talking a little bit. He has pretty big ears and hears everything. We don't discuss his situation with the doctors at the bedside anymore. Dr. Kurtzberg came by and Tommy told her he was hungry. They still will not feed him via his stomach tube. Dr. Kurtzberg reiterated that his liver is still very sick and he could linger several days or more. Everyone (physicians) tell us that we have made the right decision as far as not resuscitating him in the case of respiratory or cardiac arrest but it just doesn't ever feel like it's the right choice after having done so. In our heart of hearts we want him to recover and come home with us. It is all in God's hands. The doctors are doing what they can, Tommy is doing what he can, as are we. Tommy did get platelets today and had to get some FFP (fresh frozen plasma) tonight because of a nosebleed that wouldn't stop. His blood clotting factors continue to elevate without this stuff, a sign that his liver is not manufacturing them appropriately. He has been a good little patient. Thank you friends who have come to visit or call. Thank you for your love and concern. Life is so hard sometimes that it is beyond words.
13 Sep 2002 10:30pm: Tommy was moved out of the PICU this afternoon to the bone marrow unit, where he feels "at home". We are grateful for this. It seems like a small item, but to us it is a very important thing. It is familiarity and comfort in time of trouble. This is where we have recovered through three transplants and numerous post-transplant complications. It is where we can have some say in the care of our son without the rules and regulations of an uninviting & intimidating intensive care unit. The staff, physicians and nurses, social workers and nutritionists, unit secretaries and housekeepers are all readily available right here in this isolated little world of bone marrow transplantation. It feels like a cocoon. There is a sense of relief in being here, right now, at this time in our lives. We are grateful for that. It helps in our grief. Lots of friendly faces coming to see Tommy and us. Thank you Carrie & Don, thank you Jerry, Peggy, & Nana, thank you Kay, Ray, & Jenna, thank you Khalita for your sweet smile and perserverance, thank you Sandy and Rick, thank you Howard & Kathy, thank you James, Linda & Mike, Anna & Katie for your pictures, balloon & love, thank you Jerry & Linda, thank you Bill, Gregg & Tom, thank you "Scooby Anne" and Christina! Thank you Massoud for your phone call, Thank you Dr. Mustafa for the best hug and very kind words. Thank you Dr. Driscoll for being so vigilant in Tommy's treatment & forthright with us about everything going on with him, Thank you Jenn for coming in extra today just to take care of Tommy on 5200, Thank you Sue for everything you are. Thank you Dr. Kurtzberg for never, ever giving up on Tommy, no matter what. God has made some very special people out there. Thank you, my love, Tom, for always being positive and optimistic. You have gotten us through some tough times! Thank you Tommy for being strong even in such miserable circumstances. He is still trying to tell us what to do! Tommy's chest X-ray was worse this morning than it was yesterday. He is still breathing rapidly and on a good bit of oxygen. He is getting mostly IV medications now to try to keep his lungs dry but that will not improve the infection in them. It is difficult to imagine life without our Buckaroo. We have cared for him for 8 years. Our lives have been totally focused on him, especially during these last 3 years with transplantation. Thank you God for allowing us to have Tommy this long. I can recall several times before when I thought we might lose him, but he always pulled through. Now we have to endure another trial and this one will be most difficult because it will have to be without our Tommy. It is so very difficult to think about. Thank you all for your love and support and encouragement throughout the years. God bless you all.
9:00am: "Be with me Lord, I cannot live without Thee, I cannot bear to take one step alone...." The words of this song are echoing around in my head this morning. Tom and I had to make some very difficult choices that any parent shouldn't have to make. When we arrived Tommy was getting another liver ultrasound. We thought, "Uh-Oh". We learned that Tommy's bilirubin had risen somemore and his blood clotting values were climbing still. After the ultrasound the bone marrow doc told us that the blood vessels to the liver were not seen or they had very little blood flow to the organ. This could either be the result of GVHD or perhaps even from his underlying disease, Dyskeratosis Congenita. The only way to tell would be a liver biopsy, but then it would be another procedure and he could bleed severely from it. Tommy's lungs and kidneys now have also become affected by the sick liver. Tommy's respiratory rate was back up into the 50s & 60s yesterday. By the time we left he was on a lot of concentrated oxygen via a mask. He was still listening to everything around him though. He knew when the TV went off, he would say, "DOO!" or "POOH!". He liked the background noise probably to drown out the rest of the machinery in the room. Then they asked us to make some difficult decisions regarding resuscitation efforts if Tommy were to stop breathing or if his heart would stop or his BP drop. Dr.Driscoll spent a lot of time with us yesterday and Sue Wood came to see us special on her day off so we could talk about this. Through a lot of tears we decided not to mess with breathing tubes and other types of resuscitative measures. We'd like Tommy to be comfortable and peaceful and not poked at and prodded when God calls him home. Please pray that Tommy will be at peace and not afraid when his time on this earth is done and that we can help lead him gently and safely home to the Father. Thank you for all your love and support. " But Jesus called them to Him and said, 'Let the little children come to Me, and do not forbid them; for of such is the kingdom of God. " Luke 18: 16. Amen!
12 Sep 2002 Tommy spent the night in PICU again. There were some staffing issues on the bone marrow unit, so he stayed. We hope he will go out today because we want to spend the night with him. You cannot sleep with your child in the PICU. You can hang around, but you can't sleep. Anyway, Dr. Kurtzberg and Sue came by last evening and devastated us with, "I don't think his liver is going to get better." She was basically telling us again for the second time in a week that she thought he would not make it. She does not believe that she is getting this Graft-vs-Host disease under control that is attacking his liver. This is not what any parent wants to hear. Tommy's bilirubin and blood clotting numbers were up again yesterday, so that was not good either. He was more jaundiced. He is weak from lack of nutrition and from being so sick. His body is frail. We are very weary. God sent Linda and Mike Morgan our way last night after all of this. Thank you Lord. He knew we needed somebody to hug. They are good friends. We also forgot to say Thank YOU to our preacher, Bill Voss, who came to Duke on Monday to be with us during Tommy's procedure. We are grateful for his company. We will see how the next few days go. We are not sure about anything anymore except God is faithful and we hope to be as well, through all of this. Tommy is a special little boy and we love him very much. Please continue in your prayers for us. " Bow down Your ear, O Lord, hear me; For I am poor and needy. Preserve my life, for I am holy; You are my God; Save Your servant who trusts in You! Be merciful to me, O Lord, For I cry to You all day long. Rejoice the soul of Your servant, for to You, O Lord, I lift up my soul. For You, Lord, are good, and ready to forgive, and abundant in mercy to all those who call upon You. Give ear, O Lord, to my prayer; and attend to the voice of my supplications. In the day of my trouble I will call upon You, for You will answer me." Psalm 86: 1-7. Amen!
10 Sep 2002 11:00pm: Tommy is in the PICU. His lungs were overloaded with fluid, so they gave him some IV medication to get rid of that. His respirations came down from the 60s (yes, 60s) to the 20s, which is normal. His is getting a continuous IV pain medication at a low dose through the night, which has also helped settle him down. The oxygen mask he was wearing was cut back from 50% to 35% and hopefully will be off by morning. He is comfortable now. His BP is still elevated at times and he needs a little extra medication for that. We hadn't really seen lab values from this afternoon/evening, so we can't tell you what the liver function studies were, although his albumin was up to 4.0 (normal) on it's own since yesterday. That hasn't been normal for the past 3 months! This could mean the liver is improving in function since the liver produces albumin. Tommy has become very weak from being in bed so long and being so sick. We hope we can start exercising him again soon. One thing at a time, though. Tom and I are exhausted and ready to pass out in bed. This will be the first night Tom has not had to sleep on that chair in about 6 days. There are blessings in everything. Please continue your steadfast prayer for Tommy to improve each day. Unfortunately, Tommy's Uncle Howard and Aunt Kathy did not have much of a visit with him today since he had gotten so sick overnight. Computer games will have to wait until another day! 1:00pm: Well, from the fire into the "frying pan"!! Tommy started getting pretty miserable during the night. His respirations have increased considerably and are shallow. He is very restless and in a lot of pain. He cannot get comfortable. He is having some bright red bloody stool, which may be expected, I'm not sure. Some pain is expected and he could have pancreatitis again, only a more severe case since they messed with his pancreatic duct while in there. They don't want to give him much in the way of narcotic supposedly because it could shrink the sphincter opening back down and the sludge would build up again. He is getting around the clock transfusions of blood products. The staff here is having a hard time keeping up. Tommy's nurse, who has been very on the ball this morning despite having two other patients, told the BMT docs that he needed to be in the PICU. That was probably just before I went over to the bone marrow unit to give them the what-for and tell them Tommy needed to be in the PICU or on 5200. So, they got it from both ends. Guess they figured he was sick then. Anyway, we will be moving Tommy to the PICU this afternoon sometime so we may have trouble updating the website because there is no access from there. Please continue to say more prayers for our Tommy.
09 Sep 2002 9:00pm: The ERCP is over!! And it was successful!!! Praise be to God!!!! Several things fell into place: first, Sue Wood, Tommy's nurse practitioner, was able to be with him during the procedure, change his central line dressing while he was asleep and be a voice and eyes/ears for the bone marrow team in case questions/problems arose; secondly, the adult GI guys were able to contact Dr. Treem (Tommy's GI doctor) who had just gotten back into town. He basically told them that they would not be able to get down Tommy's esophagus with their fiberoptic scope (too much of a stricture) and that they would need to go through his gastrostomy tube. Thank God for Dr. Treem showing up at the right time. And thirdly, they were able to cut the sphincter muscle leading to the bile duct from the intestine and clean out a lot of thick sludge that seemed to be the cause of the obstruction. Tommy will have to have a lot of platelets and fresh frozen plasma over the next few days to keep him from bleeding. This is the primary concern now. His abdominal girth is also much decreased in size just this very evening. The doctors will be watching his liver function tests over the next several days to see if he is improving in that regard. They may also re-scan his abdomen at a later date. We have not seen the bone marrow docs so worried over Tommy in such a long time. This procedure really had them scared and us as well. I guess you could call it "referred anxiety". When they tell you that THEY'RE worried, great cause for concern is there. The look of relief on Dr. Driscoll's face was worth a thousand words, as the saying goes. He even had the pediatric surgeons on stand by in case things went awry with Tommy during this case. All in all they left nothing to chance. We are glad for that. Now we hope that Tommy will heal and his body will function properly. Tommy's body still has to fight the Graft-vs-Host Disease process affecting his liver and intestines, which is causing the blood clotting problems among other things. Please continue in your prayers for our Buckaroo! Tommy is resting quietly tonight still with us by the almighty grace of God! As is the title of one of my favorite songs, "To God Be the Glory...great things HE has done!!!!" " Have you not known? Have you not heard? The everlasting God, the Lord, the Creator of the ends of the earth, neither faints nor is weary. His understanding is unsearchable. He gives power to the weak, and to those who have no might He increases strength. Even the youths shall faint and be weary, and the young men shall utterly fall, but those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isaiah 40: 28-31. Amen!
10:00am: Please continue to pray diligently for Tommy today. His blood clotting factors are elevated and they continue to give him Fresh Frozen Plasma, Platelets and also a unit of blood. The doctors do not paint a favorable picture but are doing all they can to keep Tommy out of danger. We hope and pray he comes out of this without complications. It is quite unsettling to us and we have to put our hope and trust in God no matter what the outcome. It is a difficult thing to do. Pray too that God will give us wisdom in all of this. Many thanks.
08 Sep 2002 9:00pm: It was good to be able to worship tonight with the brethren at the Durham Church of Christ. The lesson was appropriate: "Trusting God in the Face of Adversity!" How did that preacher know we'd be there??!!! hahaha...Earlier this afternoon we had voiced our frustrations to the PICU doctor who oversees the stepdown unit out here (about not seeing the GI doctor). I don't know if he helped make things possible but by 3:30pm we were talking with the adult GI physician about this ERCP they will do on Tommy tomorrow. It has helped decrease our anxiety some and it gave the physician some helpful information about Tommy. The Lord has been merciful! An answered prayer. 12Noon: Tommy is excited because his Nana is here for a couple of days! They have a good time watching cartoons together. They especially like Rolie Polie Olie! Tommy's coagulation studies are more elevated than they were yesterday despite extra doses of Vitamin K. Today he will get some Fresh Frozen Plasma (FFP) to try to correct this problem. He will also get platelets. This could be an indication that his liver is getting worse instead of better. Usually Tommy would respond to the Vitamin K, now he is not. It will also put him at greater risk for bleeding and other dangers if they go ahead with this procedure to open his obstructed bile duct. It would really be nice to be able to talk with these adult GI people who are supposed to do this, but now we find out that they don't work on weekends. And Dr. Treem (Tommy's GI doctor) is no where to be found. He must be on vacation and is not responding to pages and email. So, pray hard, because Tommy will have people messing with him that don't even know him nor have seen him. It's pretty scary, but we're told postponing this is not an option. Lord, have mercy on us! 06 Sep 2002 Tommy had a good day today. Quite a turn around from the Benadryl-induced stupor of yesterday! He was up in the chair most of the day and even enjoyed playing his computer games! He was a bit more talkative and also enoyed some visitors. After the physical therapist was here, a friend of ours from Durham, Tom Eudaily, stopped by as did Sue, Tommy's nurse practitioner, and Miss Trish, Tommy's inpatient school teacher. He was worn out by about 4pm and has had a very good nap. Anesthesia stopped by to discuss his case for Monday but we haven't seen nor heard from any of the GI doctors. We hope someone will come by over the weekend instead of an hour before his procedure on Monday. Tommy's a pretty complicated case. Tom, unfortunately, has a sinus cold that is dragging him down. We hope it is not catchy. We were hoping Dr. K. would stop by tonight but so far no sign of her. Tommy's electrolytes, magnesium, phosphorus and calcium are finally in normal or near normal ranges. Praise God for that! They haven't been like this for over 2 months! It will probably be a long weekend waiting for Monday. I don't like waiting! Thank you for all of your encouragement and prayers! " Whom have I in heaven but You? I desire You more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever." Psalm 73: 25-26. Amen!
05 Sep 2002 8:00pm: Found out tonight that Tommy needs to have an endoscopy (ERCP) into his small intestine to his bile duct to free up the obstruction causing the gallbladder to swell and become irritated (hopefully not infected). This is planned for Monday early afternoon so far. We have not talked to the doctor who will perform the procedure, which will be an adult GI guy because pediatric GI rarely has need for doing such a procedure. We have heard that this doctor has done a few children with this same problem, so that is a little reassuring. We also stressed for bone marrow to get a hold of Tommy's usual GI doctor, Dr. Treem, who knows him and his GI tract extensively. If Tommy needs to have his esophagus dilated before they can get down him with a 'scope, then Dr. Treem needs to inform these people of the "quirks of Tommy". There is no one else who knows him so well and it would be extremely unfortunate if someone didn't do their homework beforehand and ran into unanticipated difficulties with Tommy's anatomy. Tommy has slept most of the day away and his abdomen continues to increase in size. We hope we can keep it from impinging on his respiratory status. His Tacrolimus level is finally coming down but he remains very immunosuppressed. This procedure may be what tips him in one direction or the other depending on if they can keep things under control when trying to stent the common bile duct & drain the gallbladder and whether or not he becomes infected. Pray he has no complications. Pray for success. Pray for relief from the fluid in his belly. Thank you all. 11:00am: Tommy had a fairly good day yesterday. The preacher from the local congregation here in Durham came by to visit us, physical therapy worked with him some, and he had another abdominal ultrasound. We found out Tommy has a "tickle" spot on the right side of his abdomen. He laughed and laughed as she rubbed the ultrasound wand over his belly. Then he got mad since the tech wasn't quitting fast enough for him and he started fussing. Tommy was moved out of the PICU last night to a stepdown unit since his blood chemistries are stabilizing and his blood sugars are in the range they want them to be on this TPN. His condition however is still tenuous. Dr. Berman from GI stopped by this morning and told us the bile duct is dilated and obstructed and if it is not taken care of an infection could develop and disperse into his bloodstream again. These are bad bugs, Gram negative stuff, which Tommy had back in July (i.e. enterococcus). And now we are wondering if he had this brewing all along back in July to give him the infection he had back then. Dr. Berman is saying that Tommy needs to have this obstruction relieved and it is risky for him. He is very immunosuppressed and is in much danger when it comes to infection. He is going to talk to Dr. Kurtzberg about the situation. Guess we'll know something about all this mess later today. Sounds like he could end up back in the PICU if they do this thing. He really needs to be on the bone marrow unit and there is just no place to put him. Too many sick kids. Of course we are focused on our sick child and we want them to get a room for him there as soon as one becomes available. She assures us that she is trying to arrange this. We are also adverse to sleeping on this "chair-bed" for the next 2-3 weeks. Tommy's platelets are back down to 16,000 today, so another platelet transfusion. His is gorked from the IV Benadryl they pre-medicate him with prior to this. Please continue to pray for Tommy. He is in a lot of danger and needs all the prayers you can offer. 03 Sep 2002 We are on the proverbial roller coaster ride. Tommy looked pretty good this morning when we saw him (he had some blood and platelets yesterday). This afternoon brought a nuclear medicine scan of his liver/gallbladder/common bile duct that lasted about 2.5 hours (it usually takes an hour). They could not see the bile getting into the intestine from the common bile duct, so we probably have a "plumbing problem" going on there. They will try to take him down in the morning again to take another picture to see if any of the radioactive material has gotten into the intestine before the material is totally excreted from the body. Tommy was an extremely good boy. He had to lay still on his back for the whole time...and he did! No fussing or complaining. He was great! Tommy's bilirubin is down slightly from 5.7 to 4.7 so they think the "actigall" drug is working. Dr. Kurtzberg feels the elevated bilirubin is from the obstructed bile duct but she also feels he has some serious GVHD going on in his liver or she feels he could have the Epstein-Barr Virus wreaking havoc in his intestines, which would not show up on a blood EBV test. Tommy will most likely have to have some kind of tube or "stent" inserted into his duct to the intestine to relieve the obstruction. This procedure has both the pediatric and adult GI people involved. Guess it's more common in adults than children. This would be done via an endoscopy/gastroscopy type procedure. Nothing is scheduled for this yet. Dr. K. talked to us out of earshot of Tommy and mentioned that he will be very immunosuppressed and that if this GVHD doesn't come under control in another 2-3 weeks, he most likely could die. Quite a reality check there. Dr. Kurtzberg is usually the most hopeful of physicians. She also mentioned that she wanted to keep Tommy in the hospital for the next 2-3 weeks while he is so immunosuippressed and requiring freqent transfusions, TPN, etc. We will have to figure out something about working. Tom and I need to get back to work some how. We will be moving to an apartment complex tomorrow that will be less expensive for us in the long run. Please continue to pray for Tommy. He needs your supplication to the Father. Many thanks. " I know that whatever God does, it shall be forever. Nothing can be added to it, and nothing taken from it. God does it, that men should fear before Him. That which is has already been..." Ecclesiastes 3: 14-15a. Amen! 01 Sep 2002 Another month come and gone and another hospital stay to endure! So much for a "summer". We've spent most of ours in jail, I mean in the hospital! hahahaha...Tommy was feeling some better today, even though his bilirubin was more elevated than yesterday. His sodium + chloride went upward beyond normal and so there were multiple IV changes and rate changes. By 11pm tonight his sodium & chloride were coming back into normal range. His blood sugar level also finally started to come down under 200, to 164. Tomorrow they will start his TPN back up and determine how much insulin he should need with it. I asked the bone marrow doc (Dr. Martin) to have Tommy's GI doctor see him. They are usually reluctant to consult people when they feel they can handle the situation, but our son is sick with a lot of GI problems and we want a GI specialist! So hopefully by Tuesday when his GI doctor gets back from the weekend, he will be seen. The swelling in Tommy's legs and feet is pretty much gone, but his abdomen is still quite distended. They were drawing blood sugars every hour on Tommy and lab work for chemistries (electrolytes) evey 2 hours. They still do not want to feed him by his gastrostomy tube because of his pancreatitis. His lab values for pancreatitis were back down to normal, but other liver enzymes were up. The plan is also to start him back on Cyclosporine, an immunosuppressant drug like Tacrolimus, which Tommy was on until the second transplant when he had a seizure from it. Dr. Martin feels that Tommy's body has developed a T-cell clone that has become resistant to the Tacrolimus, which is why it is not working and we are having all these GVH issues despite high levels of Tacrolimus in Tommy's bloodstream. He feels it is unlikely for Tommy to have seizures on it again and that we must try this approach to getting GVH under control. Since we wore Tommy out trying to get him to pee into a cup tonight (for about an hour) he fell asleep early, so we were able to leave the PICU before midnight (where does all this pigheaded-ness come from?????). It will be good to get some sleep. Thank you to all who continue to pray to the Lord for our son. We are grateful. " Though the fig tree may not blossom, nor fruit be on the vines; Though the labor of the olive may fail, and the fields yield no food; though the flock be cut off from the fold, and there be no herd in the stalls--Yet I will rejoice in the Lord, I will joy in the God of my salvation. The Lord God is my strength; He will make my feet like deer's feet, and He will make me walk on my high hills." Habakkuk 3: 17-19. Amen!
31 Aug 2002 Today Tommy went for a CT scan of his abdomen. He has pancreatitis. It was also learned by CT that he has "sludge" in his gallbladder causing obstruction of the common bile duct into the intestines and also into the pancreas. So, this is why some of his liver studies have been elevated and why Tommy is jaundiced. They have started him on a medication called "Actigall" to try to rid the CBD (common bile duct) of its obstruction of sludge. It also showed some inflammation of the large intestine (no surprize there) and a small pleural (lung cavity) effusion (accumulation of fluid) and small pericardial effusion (around the heart). The attending BMT physician today thought they would try for a nuclear medicine study on Tuesday to determine if the CBD really is obstructed at the opening into the intestine. He said this is the most common point of obstruction. No one apparently works on the holiday weekends here, so we have to wait on that. Tom stayed overnight and didn't get any sleep. You see, in the ICU, you cannot sleep in the room with your child. They have a very small waiting room with very uncomfortable chairs in it for a 16 bed unit (and one family with friends occupying 90% of the room, children included...why not bring your infants, toddlers & small children to the hospital at midnight? Everyone should come, right?!). Excuse my sarcasm. It was tough to sleep in the tiny chairs with the low backs for Tom. Today I spent half the day driving home and back to Duke again after packing up all our gear. We're not sure how long we're gonna be here or be in the hospital. Tommy was perkier today but still yellow and still with a distended abdomen. His arms and legs are skin and bone. No muscle left. Poor nutrition for the past 2 months has wasted him away. Today they are giving Tommy IV fluids with electrolytes and minerals in them, partly with sugar and partly without, to see how much of what he tolerates without his blood sugar going sky high. Then they play with the IV insulin drip to see how much he needs to keep his blood sugar under control with the amount of glucose in his IVs. They will not restart his tube feedings until their "experiment" is over with...which takes about 48 hours. So, he still wastes away for now. They also decided he was dehydrated from the elevated glucose levels, so they cranked up the rate of the IV fluids and he IS going! That is about it from here. We are ready to pass out and try to sleep. Today was one of the rare nights where both Tom and I were able to leave Tommy at the hospital by himself because he has a nurse all to himself to watch over him. (He's been a very good patient!) He was rather upset about it. Yesterday he didn't care because all he wanted to do was sleep. Tonight it was a sad story! Hard to leave the Buckaroo, but we had to do it to recharge our Zombie batteries. 'night, 'night!!! ZZZZZZZzzzzzzzzzzzzzzzzz . I can hear Tom snoring already! :) 30 Aug 2002 Well, forgive my incomplete entry from two days ago. Tommy's swelling had gone down a good amount, so we were hopeful that things would be better for us in clinic today. Tommy was scheduled to receive another round of IV Infliximab and IV Rituximab to stave off the GVHD in his liver and intestines. I also decided that we would not pack up the car as we had been doing for the past three or so clinic visits, anticipating possible admission to the hospital. I was tired and just didn't feel like packing up the "kitchen sink" for us. It involves a whole lot more than just packing a suitcase and some toiletries...when we get done "packing", the van is loaded! Tommy woke up rather ornery and was just obnoxious. Couldn't please him with anything. He continued this way in clinic. Found out his glucose from this morning's blood (that we had drawn at home) was over 400 (normal blood glucose is around 60-120). A recheck of his glucose level was 669!!! His IV TPN was stopped and another glucose was checked...it was still over 600. Sooooooo..... what to do! They gave Tommy some IV insulin to bring it down and wanted to admit him, but since he is so immunocompromised, they did not want to put him just on any peds floor (bone marrow unit is full). Dr. Driscoll who was the attending bone marrow physician in clinic today decided to admit Tommy to the PICU (Pediatric Intensive Care Unit). So that is where he is at tonight and we are here in Durham without clothes!!! The other bad news is Tommy's bilirubin is higher...4.4 and another measurement in his blood called lactic acid is quite a bit elevated from Tuesday, up to 4.2 from 2.9 (not a good sign). He also continues to develop tiny purplish lesions on his skin and blisters scattered here and there on his legs and arms. We don't know why. His platelets are not coming up any...they were 18.000 today, only three days after getting a transfusion. Granted, platelets do not last very long after being transfused, but we were hoping for some vestage of good news and received none again. Dr. Driscoll, who never minces words, kept saying how seriously ill he was and I kept thinking, "why are we sitting at home if he's so sick?" Tom and I are doing everything we can to take care of him and it just doesn't ever seem to get better. As were were told, point-blank, Tommy is on maximum drug immunosuppression and it is still not controlling his GVHD!!! And his liver is in trouble. Just when we thought he was somewhat stable after Tuesday's visit, here we are yet again in the hospital. Of course, Dr. Kurtzberg happens to be out of the country too! Having Tommy in the PICU may be a blessing in disguise, however. Perhaps he'll get the extra attention from specialty physicians that he really does need at this point in time. Perhaps the underlying cause of all of this will come to light if it's something other than GVHD. Perhaps he has an underlying infection causing all of this that's been masked by all the steroids he's been on. Who knows! We are glad he is here and being watched over carefully. We do not know how long he will be in the hospital or how long we will be down here again. We are hoping and praying that God will restore Tommy to good health. He is so special! Please continue to pray steadfastly for our son and for all the children here on the bone marrow unit and in the PICU. 28 Aug 2002 Yesterday Tommy received a unit of blood, platelets, IVIG, a drug called "Infliximab", a drug called "Rituximab", and a bolus of Sodium Phosphate. All of these IV infusions took about 9 hours total to infuse. We were home around midnight. Tommy's liver enzymes have not gone up but they are not coming down much either. Dr. Kurtzberg thought he should be responding to some of these IV "-mab" drugs by now and was hoping his bilirubin would have come down more. So, she added a couple more drugs to Tommy's daily schedule. She added another immunosuppressant drug called Imuran and also added Lasix to try to get rid of the fluid collecting in his tissues and abdomen. He had another abdominal ultrasound since his abdomen was larger than last week. He's rather uncomfortable with having such a huge belly and he is so much heavier to pick up.
25 Aug 2002 PRAISE GOD!!!!! Tommy's bilirubin has dropped to 2.7 from 3.9 on Friday!!! He has had a good day today as far as alertness goes and his jaundice is decreasing. His stools on the other hand are increasingly worrisome. His hemoglobin dropped from 9.9 on Friday to 7.7 today. YIKES!!! Bloody stools still. He doesn't have that many but when he goes it is quite a bit. Dr. K. thought he'd be okay until Tuesday or we may need to go down tomorrow for a red cell transfusion. His platelets are heading down quickly as well. This twice a week transfusion stuff is something we haven't faced since before transplant. It is crazy! It is difficult to just try to get to work and have to deal with Tommy's frequent, and often unexpected, trips to Duke. His Magnesium level today was also in the gutter, dangerously low. Just a week or two ago they were having to cut back severely on the amount of Magnesium he was getting on a daily basis because his levels were too high! Go figure! There is such a wild swing with everything. Tough to figure out why. Thank goodness I had some IV Magnesium and Normal Saline that I could draw up and give to him (the "on-call" Burnette Pharmacy here!). Thank you all for your continued prayer; please remain steadfast in them. We continue to hope in the Lord with all our might and with the strength He gives us each day. " May the glory of the Lord endure forever; May the Lord rejoice in His works. He looks on the earth, and it trembles; He touches the hills, and they smoke. I will sing to the Lord as long as I live; I will sing praise to my God while I have my being." Psalm 104: 31-33. Amen!
24 Aug 2002 Hi all! We were at Duke again yesterday for another clinic visit. Tommy's bilirubin was holding the same, so thank the Lord that that did not increase, nor did his other liver enzymes. His chemistries still remain out of balance and Tommy is now getting TPN (total parental nutrition, i.e. "food in an IV bag") and we are cutting back on his tube feedings. He is still having some bloody diarrhea which has not improved on the steroid dose he is getting. Tommy had an abdominal ultrasound done yesterday as well as a spinal x-ray. He still is thrashing his head around when he lays down and is complaining of having a headache which intensifies when he is flat. They are not so bizarre as they were last week. Tommy's EEG study showed no evidence of seizure activity. Tommy's immunosuppressant level is rather high and this might be part of the problem. Despite not having to wait on Dr. Kurtzberg seeing us yesterday, we still were there until 8pm. Tommy had 4 different IV infusions, most of them taking 2 hours to go in beside his platelet transfusion. His platelet count had gotten down to 19,000. His hemoglobin is not dropping as fast, but it is still inching downward. Tommy's eyes are still yellow and his skin is blistering here and there, not to mention all the bruising. His feet and legs are swollen as well as his abdomen. He looks like one of the kids you see on TV commercials of malnourished children in some third world country. It is a difficult thing to see your child like this. He has a huge blister on the bottom of his right foot that has lost most of it's fluid now, so walking on it is not too bad. He had some energy this morning but it doesn't take long for him to get tired. We will do labwork tomorrow and back to clinic on Tuesday. Since Tommy's liver lab values were not increasingly worse we opted to go home and not have him admitted. We'd rather be home, but if Tommy starts to go "over" the edge and get out of control, we will have him where he needs to be. Thank you for your prayers and encouragement, they are working! God bless you and your children with good health! " 'God resists the proud, but gives grace to the humble.' Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you." 1 Peter 5: 5c-7 Amen!
21 Aug 2002 Tommy has been having some odd neurological events lately. He has been having headaches but also when we would lay him down he would start thrashing his head from side to side like he couldn't control himself. He also does not like to tilt his head back these days. So, at clinic yesterday, Tommy had to endure an EEG test and a CT scan. The CT was "negative"; no results from the EEG. Tommy had a cow with all the jelly and wires they had to attach to his head for the EEG, but after that was finished, he calmed down and they were able to finish the test. We received terribly bad news with his bloodwork also. Tommy is starting to experience some liver failure. His eyes are starting to turn yellow and his abdomen is enlarged from fluid escaping out of the blood vessels into the tissues and abdominal cavity. He also continues to destroy red cells and platelets from antigens in his bloodstream. Dr. Kurtzberg feels this is all from Graft-vs-Host disease that has now attacked his liver. It is almost impossible for us to believe, that 2 years after transplant, this is happening to him now! We are shocked and terribly upset at this news. Tommy was started on a new IV drug yesterday to try to quell the GVHD and stop any more liver damage. It may work but it may not. We were told that he is in serious trouble and if things are not better soon, he may have to be readmitted to the hospital. We will have to make more visits to clinic, i.e. this Friday. More labwork to be done tomorrow. Please do some serious praying for our son. We know that Tommy has been a gift from God for 7.5 years, but it's not any easier to let go. God bless you all. " The works of the Lord are great, studied by all who have pleasure in them. His work is honorable and glorious, and His righteousness endures forever. He has made His wonderful works to be remembered; " Psalm 111: 2-4. Amen!
15 Aug 2002 Well Tuesday's clinic visit was the usual long haul. This time Dr. K. actually told us we'd be last "so we could talk more"! hahaha....We didn't get home til close to midnight. I was ready to pass out. Tom too. But Tommy, having had a nice nap, was ready to go! The news is good: Tommy still has 100% donor cells although the amount of cells in the marrow is markedly decreased. He has developed "anti-platelet antibodies", meaning his platelets are being destroyed by his own body probably from a severe Graft-vs-Host reaction. Treatment is IV steroids and IVIG (immunoglobulins), which Tommy has been getting. He has still had terrible diarrhea and has lost about 3 pounds in weight just since last Friday. They have increased the IV fluids we have to run here at home, in volume. His stools are starting to slow down and not be too watery, so we are hopeful that this will start to subside sometime soon. Tommy will not be able to receive anymore stem cells until he is "cured" from this episode and has GVHD under control. It is now essential that he receive these stem cells, otherwise we will have more of the same problems with infection & GvHD flare-ups which could cost him his life. The bone marrow biopsy showed virtually no lympocytes (T-cells), so there is no question that he needs to have some help on that front! Tommy's platelets were 51,000 on Tuesday and we have had to take labs to get run here today. He has to receive a platelet transfusion if he gets less than 20,000. His bruising is subsiding. The poor kid looked like he had tumbled down a hill or been in some kind of boxing match. He would bruise just from the pressure of sitting on a sofa or laying on his legs. His last blood count showed he was making "large platelets" (new ones) and a lot of new red blood cells, so we are hoping for increased counts, but we are told it could take a while for them to recover. We are holding onto the hope that is Jesus. Thanks for your prayers and your love! God's blessings be yours!
10 Aug 2002 Home again...hopefully longer than 6 days! We will have Tommy's blood checked again tomorrow and if his platelets are less than 50,000 we will have to make another trip to Duke to transfuse him. If they stay over 100,000 then we should be good to hang out 'til Tuesday. Tommy looks like a spotted purple leopard with all the bruises all over his body. The cause of the "Idiopathic thrombocytopenia" ,or ITP, is not yet known. It may be viral or drug related. This is causing Tommy's body to make plenty of platelets but his body is destroying them just as quickly. We are on another IV antibiotic (only ONE this time) in case they are not catching something bacterial. It is what's known as a "broad-spectrum" antibiotic. It is only a 30 minute infusion, so nothing compared to last go-around. Tommy's Vancomycin levels were sky high last week and this may have caused him to go into a tail spin, but no one is quite sure. It was such a sudden onset. Unlike last time we got home, I have not unpacked all the bags around here. I hate such clutter, since we have plenty of clutter to deal with anyway, but I will have to force myself to endure the mess. Tommy's stools are still quite black in color (old blood) and we are having trouble getting his feedings back up to full-strength for any length of time. He is on IV steroids twice a day now and because of that his blood pressure gets to be sky high as well, so Tommy has to take some yukky BP medicine under his tongue, which is not a pleasant task. With all the steroids he is on, I guess I'm surprised he still has diarrhea stools. Usually an extra dose or two will get him to slow down rather rapidly. Not this time, though. So, the "saga" continues! Pray for quick resolution of this ITP that is plaguing Tommy so his blood counts will return to normal. Thanks for all your support. 08 Aug 2002 Tommy is in the hospital again at Duke!! He was admitted yesterday evening (Wed 7 Aug) due to low blood counts (red cells and platelets). On Wednesday his platelet count had dropped from 47000 to 15000 in one day. His hemoglobin has also been dropping quickly and was down to 9.0 g/dl. He has also been having a lot of dark stools indicating that his gut is bleeding. That evening he received both a platelet transfusion and red cell transfusion. This morning (Thurs) they performed a bone marrow biopsy and a bone marrow aspirate in order to determine what is going on with his counts. They are performing several studies on his bone marrow and it will take a few days to get the results. However, they told us today that from looking at the slides of his bone marrow he definitely has not loss his graft which was great news!! They have increased his IV steroids and today he received an infusion of IVIG (human immunoglobins). Tommy is feeling a little better today and depending on how his blood counts are tomorrow, he may be discharged from the hospital tomorrow (Friday). They did not have any beds available in the pediatric bone marrow unit so they had to put Tommy in a regular pediatric unit, in Room 5127. Thanks for your many prayers for Tommy!!! 01 Aug 2002 Where has the month of July gone?!! It's gone down the Duke drain, that's where! Can't believe we've lost a whole month of summer living at Duke again! Unbelievable! Anyhoo...WE ARE HOME!!!! YIPPEE!!!! Exhausted from the packing and unpacking and washing and re-arranging, etc...but it's GREAT to be HOME!!!!!! Thank you God! I will have to remember this scenario when I am at home thinking of how bored I am! Never bored with Tommy stuff to do, that's for sure, just bored from being so isolated from everyone and everything else! Oh well...I should have the cure for it now! We have at least until August 8th with continuing on all three IV antibiotics. (Am planning major rejoicing when this is finished!!!). His chemistries have gotten so bad that they had to start Tommy back on IV steroids to try to stop his gut from leaking them. His blood count (hemoglobin) also dropped a gram overnight on Tuesday and he had to receive a unit of packed red blood cells, the first unit he's had to have since January 2001. Dr. Kurtzberg believes the graft-vs-host disease in his GI tract has gotten so bad that he was bleeding in his intestines. This could also be how the bacteria, Enterococcus, had gotten into his bloodstream from his GI tract. We are still giving Tommy IV fluids over 12 hours at night that supplement his potassium, calcium, magnesium, and vitamin K. Even with these supplements his lab values have not been normal. Tomorrow we will try to get labs done at a local LabCorp station. It should be interesting. Sue, Tommy's Nurse Practitioner, had to jump through hoops to make it all work out, so we'll see if it actually does. The rest of the tenative plan is for Tommy to receive a unit of UCB (Umbilical Cord Blood) stem cells in about 3 weeks and that is all contingent on how he is doing. So pray for successful improvement in his condition. Pray also that these stem cells grow to give him the cells needed to provide him with immune function. That's it from here for now. We are just plain worn out and don't know what else to call it but it definitely isn't "perky" or "energetic"!!! hahahaa...Thank you for remaining steadfast in prayer for our Buckaroo and for us. God bless you all! " Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you. " 1 Thessalonians 5:16-18. Amen! 27 Jul 2002 Just a quick note...We all piled in the van for a trip home this weekend. It will be brief, but a welcome get-a-way for us from cramped living spaces and everyday unending clinic visits. Tom compares it to "getting out of jail" for a couple of days! hahaha...Tommy survived getting his Hickman catheter placed although they "nicked" his artery with the insertion. I wanted to ask the surgeon if he "nicked" it himself or the resident! One of the rare occasions where I held my tongue. We were so glad to get out of the hospital Thursday after his line placement and get back to the hotel to try to "relax"! hahaha...Anyway, shortly after getting there we noticed his dressing was saturated from blood oozing out around the catheter site. Not an uncommon thing right afterwards. This just made me insane because we were sooooo tired and we were looking forward to just being at the hotel without having to bother with anything or anybody else. Not meant to be! We had to take Tommy right back over to the children's clinic and listen to him scream and fight while brave nursing staff (and parents) got his dressing changed. Tommy decided it was all my fault and stuck his face in mine and screamed violently several times. I guess you could say I "lost it" right then. The culmination of a perfectly rotten month coming to a head in our son's screams! SIGH! I cannot explain to you how totally wrung out we are. We are running on "fumes", so to speak, and sputtering at best. Our lives are in such disarray. We return to Durham on Monday for a few days (we hope it's only a "few" days!)to try to get Tommy's electrolytes (potassium, sodium, calcium, magnesium) straightened around so that we can really get back home for the long term. Thank you for all of your prayers. They mean so much to us. God bless you abundantly in life! May your children be healthy and happy! " But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed--always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body....For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God." 2 Corinthians 4: 7-11, 15. Amen!
03 Jul 2002 Happy Fourth of July!!!!!!! Just a quick update....unfortunately this date finds us back in the hospital with our Buckaroo. We went for our clinic visit yesterday and Tommy felt poorly, spiked a fever and was admitted. His fingers had gotten infected and were draining some pus, having such fragile skin to begin with, from the GVHD. Last night his fever shot up to 102 and he started having chills. This is not good in a child without any immune function. Dr. K did not feel good about letting us leave. Luckily, they had a bed available on the bone marrow unit (by the grace of God), and we were able to be admitted there. With this infection going on we haven't even had the opportunity to discuss, any further, transfusing additional umbilical cord blood stem cells into Tommy. Please pray for his recovery. Also pray that this is not the resistant form of bacteria staphylococcus (MRSA), which may be difficult to erradicate in an immunosuppressed child. Thanks for your prayers. We have no private computer at Duke, so look on the guestbook since we may be able to update from there using caringbridge.
20 Jun 2002 Happy Summer all! I find it futile to keep counting the "days" post-transplant, so I didn't bother this time. Tommy got to Duke Tuesday and had an acute flare up of GVH symptoms: diarrhea, abdominal pain, vomiting. They gave him an extra IV dose of steroids which settled him down, but we had to give him more when we got home. His Tacrolimus level was low (his immunosuppressant drug),so this is probably why he got sick. He had been doing pretty well in that regard up 'til then. We were in clinic for about 8.5 hours before even being seen by a nurse practitioner or a physician. This made us getting home around 11:30pm, getting to bed around 1am and getting woke up several times during the night by Tommy = "Zombie" status the next day. We are past the exhausted stage and I'm not sure what you can call it now but it has gotten worse instead of better with what normal people may call "rest" or "sleep". Tommy's left leg biopsy, cultures, etc, have all been negative. Now...get this...the pain is gone in his left leg but it is now in his RIGHT leg! Yes, indeed, it is travelling!! Makes us think he is just having "growing pains" or making fools of us all. Tommy's hands are a mess, more so than usual. The tip of one of his fingers is infected and we don't know how he did that. It has a gash at the very top and the entire tip of the finger is reddened and inflammed. We may have to visit the pediatrician here tomorrow if it doesn't look any better. Our discussion with Dr. K. about infusing more stem cells (umbilical cord blood) into Tommy, in the hopes of growing white cells that will provide him with immunity, was rather short and incomplete because we were well into the evening hours and she had more kids to see. I guess it's an inevitable course, otherwise he probably will never develop any on his own. It's been almost 2 years since this last transplant and he still doesn't have any functioning T-cells (which are responsible for immune function). Dr. K. is very concerned that Tommy is quite susceptible to EBV or some other viral/fungal or bacterial infection that could overwhelm him because of this lack of immunity. (It doesn't make US feel good when SHE'S "very concerned"). He also could develop more GVH disease with this (yip yip yahoo)! She doesn't think he would need any chemo since he has nothing that would supposedly fight against these cells. She said we could have the cells transfused in clinic, kind of like a blood transfusion, and stay a few hours, then leave. She thinks it would take 3-6 months, perhaps up to 12, to see results. We will most likely have to try this, otherwise Tommy's chance of having any real life outside of this house is nil. We have been living in "isolation" now for 3 years and it is really getting old. I think Tommy feels it more than he lets on. He is always really happy to see anyone other than Mom or Dad! He even likes seeing his Uncle Howard! hahahahahahaha!!! That's the story from here! The best part of having been through all of this is the people we've met and the children who show such courage and bravery in the face of such overwhelming adversity. We adults would flail under such immense physical, emotional and spiritual duress, but not these little ones. They are true champions of life! Please say a prayer for them. God bless you all! " Love has been perfected among us in this: that we may have boldness in the day of judgment; because as He is, so are we in this world. There is no fear in love; but perfect love casts out fear, because fear involves torment. But he who fears has not been made perfect in love. We love Him because He first loved us...For whatever is born of God overcomes the world. And this is the victory that has overcome the world--our faith." 1 John 4:17-19; 5:4. Amen!
01 Jun-30 May 2002 (Day T+642) I'm going to try this one more time. Our computer has been acting strangely and my computer-guru husband, Tom, is on the case. I'm sure he'll unravel the mystery soon, not much gets by him in the computer world. As I was saying (for the third time)....We went to Duke on the 21st for our usual clinic visit. Tommy, by then, was not walking very much and having trouble bearing weight on his left leg. This had been going on for 2-3 weeks before our appointment after he hit his left leg on his metal school desk. Dr. Mustafa,who was in clinic that Tuesday decided X-rays were a good idea. The x-rays however failed to show anything other than frail, osteoporotic bones from being on steroids for so very long. He thought it would be a good idea to do a bone scan since Tommy was so symptomatic. That would require staying overnight, for which we weren't prepared to do, or coming back sometime later in the week for the scan. EARLY Wednesday morning we received a phone call from Duke saying they scheduled us for the bone scan for Wednesday afternoon, so we packed up and left for the day. After injecting Tommy with a radioactive material through his IV port, we had to wait for 2 hours before the study could be done. Tommy was a brave boy during the whole thing. It was made a lot more palatable after the staff had handed him a shiny royal blue concept series Chevy model truck to have and to look at during the test. It was painless. We waited for the scan to be read and knew something was up when the pediatric radiologists headed our way. The bone scan did show a "hot spot" on his left leg just below his knee, where the Buckaroo had been pointing to all along. After this discussion we had to head on over to the BMT clinic to talk to the physician there who supposedly had talked with Dr. Kurtzberg. It was agreed that an MRI was the next step and we needed to be at Duke early the next morning. Well, this made three days in a row of getting up early and running to Duke. Not to mention they told us to pack to prepare to stay the weekend. Having had about 4 hours of sleep after packing up the kitchen sink (i.e., "Tommy Gear") tempers flared (mine mostly) after having gotten to Duke early for the MRI and no one having a clue as to what was going on with Tommy or with the MRI. We hung around until 3 or 4 pm before it was decided that he didn't need to have the MRI (by the radiologists) and he would have a bone biopsy done Friday, then be admitted to the BMT unit. Luckily, Tommy was able to be admitted to the BMT unit, they are always so full with patients. This was one calming influence in the whole storm. Tommy did well and woke up to find a knee immobilizer on his left leg, something he did not enjoy and drove us crazy the entire weekend with the constant refrain of "OFF, OFF". After the immobilizer came off Monday, he realized he could still walk. But then there was the HUGE bandage that wrapped his entire leg. (The entire biopsy boo-boo was not even an 1/8th of an inch long). I think this all gave him validation that something WAS wrong and he was right all along! He has been a happy boy since the procedure. We made it home Tuesday after Dr. Kurtzberg told us the preliminary bacterial/viral cultures were negative and even the pathology report came back without any abnormality so far as they could tell. There are still cultures pending on weird things like fungus, other viruses and weirdo bugs, but we are hopeful that it will all be negative. Dr. K. had Tommy admitted because she seemed almost certain that she would have to start some kind of IV treatment on him once the cultures started coming back with results. Tommy fooled all of us. We are still having to wait on final results, some may take weeks, but so far we have not heard anything else from Duke, so we hope that means good news. Another strange thing that happened while we were in the hospital was that Tommy's WBC (white blood cell) count that had been quite elevated came down to normal, his segs/bands ratio of WBCs returned to normal (it also had shown signs of an infectious process going on), and he had no temperature spikes like he's been having at home on his low-dose steroid days. Go figure! Tommy is always amazing in one way or another! Tuesday will find us back at Duke for Tommy's regular IV meds and perhaps a discussion on transfusing him with more Umbilical Cord Blood stem cells because his immune function studies did not surprize us....he has no functioning immunity according to their numbers. Tommy also saw more dermatologists in hopes of getting rid of the boo-boos on his hands. We had to get some special cream ordered from the pharmacy and will have to find some cotton gloves for him to wear as well. (THAT will be interesting, to see if he cooperates with wearing the gloves!). Thus is our continuing saga of post-transplant difficulties. Thanks for your support. p.s....hang in there! hahahahaahaha " Therefore, since Christ suffered for us in the flesh, arm yourselves also with the same mind, for he who has suffered in the flesh has ceased from sin, that he no longer should live the rest of his time in the flesh for the lusts of men, but for the will of God." 1 Peter 4: 1,2. Amen! " Do not love the world or the things in the world. If anyone loves the world, the love of the Father is not in him. For all that is in the world--the lust of the flesh, the lust of the eyes, and the pride of life--is not of the Father but is of the world. And the world is passing away, and the lust of it; but he who does the will of God abides forever." 1 John 2: 15-17. Amen!
30 May 2002 (Day T+642) Having trouble with our computer, so please bear with us until we can properly update. Thanks... 28 May 2002 (Day T+640) Please see our "guestbook" entry for latest info. Tommy has been in the hospital this past week and we were unable to update our webpage without our computer. We have now made it back home today and he is on the mend. Will update more tomorrow. Thanks. 24 Apr 2002 (Day T+606) Yippee!! We made it two weeks from one clinic visit to the next! Not a big deal to some, but it is for us! Tommy has been having mostly good days, but is spiking temps (up to 101`F) on his low steroid dose days. Not sure what it is from: if he has an infection being masked by the steroids or if it is from the GVH in his gut. Dr. Kurtzberg couldn't say definitively either. (And she gets paid BIG money for that!). haha...Yesterday Tommy had immune function studies drawn (blood work) and we discussed options with regard to that. If he has little or no immune function present, Dr. Kurtzberg wants to transfuse him with stem cells from another cord blood unit so, after about 6 months or so, it could produce (hopefully) T-cells Tommy needs to provide immunity. It could also fail or be rejected. She said if he has no functioning immune system, his body would hopefully not reject the cells and they would grow in his marrow and produce the cells he needed. She said there is precedence for this being done with adults with cancer who received a haplo-identical transplant (half-matched) and then received stem cells from umbilical cord blood to bolster the immune system. She said the cells that grew from the cord blood eventually took over the marrow completely. This is rather odd and interesting. Even though the cancer patient had good blood cell counts after the haplo transplant, the cord blood cells took over and engrafted all cell lines totally in this patient, including those needed for immunity. Of course these are patients who had had their bone marrow totally wiped out with chemo, radiation and what have you, so they really did have NO immunity. If Tommy's blood work comes back showing significantly improved immune function than previously, Dr. Kurtzberg will probably want to continue to lower steroids and stay the course. She is most afraid that the EBV (Epstein-Barr virus) will return with a vengance and she will not be able to control it. If Tommy's immune studies come back with "non-functional" numbers, then this cord blood route may be the chance we have to take. She said even with Tommy being on the amount of steroids he's been on, he should have 50-75 % immune function returning by now (even if it was weak), this far out of transplant. So, we are not sure what to pray for. We need distinct clarity and right now it's about as clear as mud. Well, I hope I haven't confused you. It is rather complicated, but that's been our entire course. These blood studies will take about a month to complete, so it will be a while before we hear anything. On the more positive end, Tommy has tolerated a drop in his steroids for the past two weeks, now we will try to drop them some more and pray he doesn't have any acute GVH flare-ups. Please continue to pray with us! That's it from here! Have a great spring! " Truly I know it is so, but how can a man be righteous before God? If one wished to contend with Him, he could not answer Him one time out of a thousand. God is wise in heart and mighty in strength. Who has hardened himself against Him and prospered? ....Who can say to Him, 'What are You doing?' " Job 9: 2,3,4,12. Amen! 10 Apr 2002 (Day T+592) What to write?? Can't say much is new. We did get to miss clinic for a week! Thank God! It was nice for a change. Tommy had one rough spot in the two weeks, but not bad overall really. We seem to be hitting the wet weather when we do go to Durham, though. Two weeks ago we got stuck in torrential thunderstorms on the way back. It was rough driving at night in the driving rain. Reminded me of the time we were going to Duke after Labor Day 1999 just after a Hurricane swept through the area (sorry, can't remember which one) and we were caught in a white out with walls of water coming down on us. It was pretty scarey but not as scarey as going through a transplant with your child! Tommy is on the extended-release steroid called Entocort EC and we are slowly reducing his every other day dose of Prelone. We shall see how this goes. Pray for successful weaning of Prelone. Pray also that Tommy starts to develop an immune system without GVHD flaring up. Dr. Kurtzberg told us that she is concerned that Tommy may never develop an immune system! This would be devastating. Talk about taking the wind out of our sails (what's left anyway)! She is thinking of giving him another unit of Umbilical Cord Blood if he doesn't develop any immune function in the next few months. She thinks by doing this he may possibly grow some T-cells from it that are needed to develop an immune system. It is a long shot but something we may have to go through to try to give him some protection against infection/diseases. Without an immune system he would most likely succumb to some type of overwhelming infection, be it bacterial or viral. I am leary of Tommy being anymore of an experiment than he already is, but once in, it is difficult to get out. Tommy's life is in the balance. We have to make the best decisions for him and it is not easy considering all that he has been through. So we continue to need your prayers for our Buckaroo. Also continue to remember Austin, Jenna, Michelle, Jasmine, Alex M., and a little boy named Caleb, his website is www.calebglover.com. Many thanks. " One thing I have desired of the Lord, that will I seek: That I may dwell in the house of the Lord all the days of my life, to behold the beauty of the Lord, and to inquire in His temple. For in the time of trouble He shall hide me in His pavilion; In the secret place of His tabernacle He shall hide me; He shall set me high upon a rock....Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord! " Psalm 27: 4-5, 14. Amen!
20 Mar 2002 (Day T+571) Rain, rain go away, come again some other day! Okay, we've been in a drought this half of the winter, but now I think we've made up for it this week alone! Will the sun ever shine again?? I don't like it when it is cloudy and rainy out for days on end. A day or two of rain is fine, but then I'd like to see the sun again. It is so dreary. I was having fun with the 70` temps, getting out to do yard work around the house. Now it's rainy and 50 lousy degrees! YUK! We spent another day at Duke yesterday. Nothing really new going on. Tommy's last EBV test, done even before having received the chemo drug to kill it, was back down to zero. No one is sure why. Dr. K. does not think he has any immune function to fight it, so she thinks it was just a fluke. We sent off another EBV test yesterday. These tests come back after about a week. They have to get sent out to a facility in California. So, she still wants Tommy to get the IV Chemo drug to kill the cells infected with the virus. Usually it is a four week course. If the next test is zero, then perhaps we can stop after three doses, but the consequences of such actions always need to be considered. It's too bad we can't get results pronto! Tommy, however, is feeling much better. He is doing better with his school work and is not as tired. His diarrhea has gotten some better. We have been looking for a new gel to use on his hands that have some boo-boos on them from this GVHD. They don't want to heal. I finally got a medical supply store to order it for me. A 3-ounce tube is going to cost $17.00!!! Can you believe it??!! I thought it would be worth it to try it, though. The gel is supposed to last 72 hours after being applied, so that will help. Anything for our Buckaroo! He has been through so much. It would be nice if he could use his hands and fingers again without having to be so protective of them. Please pray for Tommy this week as we are going to try to decrease his every other day steroids again. And Dr. K. is going to try to find a steroid that works more locally in the GI tract (like for people with Crohn's disease), instead of systemically, like what he is on now. This could help reduce the nasty side effects of the steroids and help reconstitute his immune function at the same time. PRAY, PRAY, PRAY!!!!! Thanks for your love! " My little children, let us not love in word or in tongue, but in deed and in truth. And by this we know that we are of the truth, and shall assure our hearts before Him. " 1 John 3: 18-19. Amen!
11 Mar 2002 (Day T+562) Happy Spring all! I'm thinking warmer weather! Can't wait actually! Tommy has been on the mend. He is feeling better but his steroids have been increased again, so that's why. Dr. Kurtzberg told us it may take YEARS for this GVHD stuff to "burn out" and so we can continue to think "isolated" for a whole lot longer. Perhaps we wouldn't have had such high expectations if we weren't told last year that he would be going to school by this spring and would be having a real immune system recovering by now. Live and learn, the hard way!! We are waiting to hear from Duke today about Tommy's EBV test sent off last Tuesday. If the count is higher than the last time, meaning the virus is active again, we will have to make our way back to Duke this week to start the chemo agent to kill the proliferating B-cells infected with the virus. We are hoping and praying for good news but realistically he has no functioning T-cells to kill off this virus. That's it from here. Will write more when we know more. Please continue to keep Kevin's family in your prayers, Jenna and her family, Alex M. and her family and all those who have travelled down this road. Many thanks. 4:00pm: And the news is.........we're headed to Duke tomorrow :>( Not really a surprise there. SIGH! " Let not mercy and truth forsake you; Bind them around your neck, Write them on the tablet of your heart, And so find favor and high esteem in the sight of God and man. Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Proverbs 3: 3-6. Amen!
03 Mar 2002 (Day T+554) Thank you all for thinking of us, we are grateful. Tommy took a lot of work on Friday to get him squared away. We, fortunately, had a bag of IV fluid in our medical supply "warehouse" and were able to get him re-hydrated and his electrolytes turned around. It also meant giving him more steroids which increases the threat for this Epstein-Barr virus to reactivate itself even further and wreak more havoc on Tommy's fragile health. It is a constant weighing of the odds of treatment and their effects: one against another. It is not easy to deal with. With all the steroids he's now getting to calm the GVHD in his gut, Tommy's BP has been quite elevated. He has to take yukky medicine under his tongue just about every 4 hours without fail. He has been a very brave boy to do this because it is really nasty stuff. We just squeaked by not having to go to Duke on Saturday since Tommy's electrolytes turned around, his vomiting quit and his stools slowed down tremendously. Thank you God! We were so happy! Tommy actually slept Friday night through the night and we were so happy as well!!!!! We will be visiting Duke Tuesday again. Pray for better insight into Tommy's care and how to care for him. He used to be happy all the time, but that's not the case now. He has been through so much and it is taking it's toll on him, especially as he gets older and smarter! On the lighter side, the good news is, Tom has become a "Great Uncle" (sounds old, huh?!); his niece just had a baby girl, "Abigail Rose"!!! Tommy would like the baby to come here to visit! hahahahhaaha.....God bless you all!!! " For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4: 15, 16. Amen! " But you beloved, building yourselves up on your most holy faith, praying in the Holy Spirit, keep yourselves in the love of God, looking for the mercy of our Lord Jesus Christ unto eternal life....Now to Him who is able to keep you from stumbling, and to present you faultless before the presence of His glory with exceeding joy, To God our Savior, Who alone is wise, Be glory and majesty, Dominion and power, Both now and forever. Amen." Jude v.20, 21, 24, 25. Amen! 01 Mar 2002 (Day T+552) Well.....Life has not gotten any simpler for us these days. Nana has gotten the 'flu, Tommy's been sick with something last Friday and now he's been sick again since Wednesday. This time it seems like GVHD of his gut acting up. He's been vomiting, having diarrhea, fevers, and abdominal pain. Not to mention vomiting up tons of mucous again. (His esophageal dilatation was 6 weeks ago, just like last time!). Got more lousy news on Tuesday when Sue told us his EBV(Epstein-Barr virus) blood study came back elevated at 8. If it continues to climb, Tommy will have to undergo more chemo treatment to kill the over-active "B" cells that multiply out of control when this virus wakes up. Last night we had a bad night. Tommy could not sleep and he can't seem to keep much down today. I am worried about his hydration status. Kids can get dehydrated very easily. I gave him some plain pedialyte and he still threw it up. SIGH!! That's about how it's been going today. Nothing is going right. One of those days when you just know it won't be okay even if thinking positively. It started with being up half the night with Tommy and it hasn't quit yet! That's our 'sad' story from here. Sorry to not be uplifting today (at least the Scripture is!). Pray for us. Many thanks. " But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair....For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal." 2 Corinthians 4: 7,8, 17,18. Amen!
20 Feb 2002 (Day T+543) Hi all! Thanks for checking up on us. We have been busy with hauling bloodwork off to hospital labs and changing medications around and taking a trip to Duke a week earlier than we thought we would. Dr. Kurtzberg wanted us to come down yesterday instead of next week since she'd be out of town then. Tom wasn't happy since he has missed a lot of work lately. Tommy's magnesium levels have jumped up to the normal range with hardly any supplements...an oddity considering he's on vancomycin and tacrolimus, which help waste magnesium. His tacrolimus levels have skyrocketed as well, causing Tommy to be very tremulous and make him hypertensive. We were warned, however, that his tacrolimus level would drop once the Vancomycin is finished. So now we have to run more blood off to the lab next Monday. Tommy's hemoglobin has dropped 2 grams since all this infection stuff started and it has not fully recovered. It still is in the 9 range (normal is ~12-14). Dr. K. said he could stay this way, chronically anemic, because of persistent inflammatory processes (GVHD) going on in his body. I didn't want to hear that kind of news. He's got enough problems to deal with, one more wasn't my idea of encouragment. His white count is back down to around 10, which is good. His renal and liver functions seem to be doing well, just looking at the numbers. We have cut back on his steroids again, giving them every other day now instead of every day. We hope this will work and will help in building his immune function while we continue to decrease them. I remember last May we had just gone to 1mg every other day and GVH symptoms flared the very next day. It's been a battle ever since, going on a year now, and a year and a half since transplant! SIGH! Guess we wouldn't know what to do with ourselves if anything was "normal" around here! Please pray for Kevin and Brandon's families as they struggle to cope with their loss. And please continue to pray for Tommy's immune function to return to normal during this year and that we will win the war with his GVHD! " So God created man in His own image; in the image of God He created him; male and female He created them....Then God saw everything that He had made, and indeed it was very good. So the evening and the morning were the sixth day....Then God blessed the seventh day and sanctified it, because in it He rested from all His work which God had created and made....And the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living being." Genesis 1: 27, 31; Genesis 2: 3, 7. Amen!
10 Feb 2002 (Day T+533) 4:00pm: I couldn't remember when we last updated, guess it was before the "catastrophe" on Tuesday struck. It was more of the same. We started IV Vancomycin again on Monday night and thought Tommy would improve, but by Tuesday morning his temp was up to 103`F and he was shaking violently with chills. He was a ghastly grayish color and his extremities were cool even though he was quite hot on the inside....not good indicators. Sue had us take him to the local pediatric Emergency department (actually, it's not local, but in Richmond, a good 30 minute drive). They repeated blood cultures both off of his port-a-cath and stuck him peripherally as well for a culture. IV antibiotics followed as well as IV fluids. His potassium was low and the numbers on his blood count were indicative of an infectious process. After spending half the morning and most of the afternoon there, Tommy was stable enough for the trip to Duke to be admitted. We had to rush home and pack, no easy feat with all of Tommy's "necessary gear" to think of taking. It's a stressful process when I'm not in a hurry, but even more so this day. We arrived at Duke about 9pm. They did more blood cultures and lab work and hooked him up for IV meds. He was glad there was "hospital TV"! We have figured out he has gotten so lazy that he wants to lie in bed with the remote and watch TV all day and all night! hahahaha....I'd like that too (and to have someone dote over me 24 hours a day)!! The blood culture from the hospital in Richmond showed the same bacteria that popped up the week prior, that they all thought was just a contaminated sample. So now Tommy is on IV Vancomycin again twice a day for at least 14 days. We will not try to weasel out of it this time around. He has to have IV Benadryl before each dose, otherwise he gets flushed and itchy during the Vancomycin infusion. We dislike this because it makes him sleepy and/or irritable, or both, for a good part of the day. But, that's life! We are grateful he is feeling better although still a bit weak. He has had a lot of diarrhea on top of all of this but by yesterday the frequency was decreasing. YEA! His hemoglobin dropped a couple of grams from 11 to 9 and his chemistries were off too: low potassium, low albumin, calcium, and phosphorus levels. BUT! His magnesium levels have been NORMAL!!! (figure that one out!). We were very fortunate to have had a room on the BMT unit at Duke for 4.5 days! Thank you God!! Saturday we were discharged and spent the night in Durham, dropped off lab work at the clinic, which is open on the weekends now, and have now made our way safely back home! IT IS SOOOOOOOOOOOOOOOOO GOOD TO BE HOME!!!!!!!!!!!!! Thank you all for your prayers. We were computer-less at the hospital so we could not update our website, which is located on Erol's server, not caringbridge. We would have liked to have kept you informed, but it just doesn't work out that way sometimes! We were saddened by the passing of our friend, Kevin and also when we learned of Brandon Coker's death. We met two very strong young men going through transplant while we were up on the bone marrow unit. One was Michael and one was Tracy. Never heard them complaining. They were constantly in the halls with their loaded down IV pumps/poles walking and encouraging others. They are strong physically and also strong in the Lord. You can see it and hear it in them. I wish I would have gotten their web addresses but perhaps we will when we go back to clinic in a couple of weeks. That's it from here folks! We are going to try to get to worship services this evening! God bless you all for your prayers! (Thank you, Kay!!!!!). 04 Feb 2002 (Day T+527) Happy Belated Groundhogs' Day!!!!!! hahahaha...I guess he was right, our short-lived "spring" weather is over (70-80` temps!) and winter is back with a vengence. The wind is pretty viscous today, making it feel "bone-chilling" cold outside. We took Tommy to Duke last Tuesday for the annual clinic event and it went well. They thought he may not have had a bacterial blood infection (bacteremia) because his second blood culture, taken before starting the IV Vancomycin, did not grow anything. I was wondering why his white blood count was still 15 though, a little bit high. Dr. K. decided to stop his IV antibiotics that day, something WE were very happy with also! Tommy was doing well the rest of the week until Saturday...he ran a temperature of about 100`F but seemed in a good mood. Sunday, however, he looked tired and worn and his temp was about 100.5. By this morning, he was 'cooking' at a toasty 102.4`F and shivering again! YIKES! At first the thermometer said 103!!! But he had just got done having a screaming fit, so I waited and took it again, but 102 isn't a whole lot better. He said his throat was hurting. It's pretty impossible to get Tommy to stick out his tongue and say "AHHH", so we had to take his word for it. We called Sue, Tommy's nurse practitioner at Duke, told her our troubles, and waited for her to arrange for things to be done. I'm not sure why things around here take so long to get ironed out, but it does. It's a good thing we called her at 7:30 this morning or we'd probably still be waiting on the pediatrician's office to call us! We eventually bypassed them and dealt with the hospital lab to run Tommy's blood tests; only took about 4 or 5 hours for that to happen. So, we will wait some more. Luckily, our pediatrician gave me a blood culture bottle to keep handy, so that saved us from having to haul Tommy out of the house again. His port-a-cath is so weird; it is in a different position every time I go to access it. It seems like it was lying on it's side today. They must not have sutured it well. So, if his blood culture comes back negative again, we are wondering what is going on here with him, causing this fever. I wish we could have gotten a strep throat culture on him (that would've been interesting!). Maybe it's just his GVHD flaring up...it's tough to know, especially with him still on steroids. (Steroids mask infection). He has had a lot of watery stools lately. Right now, he's passed out on the sofa, sleeping soundly...something I'd like to be doing too! Please remember Tommy in your prayers tonight, Dr. Kurtzberg and Sue as well! Continue to pray for Kevin, who is still clinging to life, and Brandon who is very sick also. Keep Jenna in your prayers, a boy named Evan, Michelle, Alex...and all those children who suffer from devastating illness. Pray for those who have lost their children and have to live each day without them. May God give them the grace, peace, strength, wisdom and courage to live life for His glory and honor. " Now to Him who is able to keep you from stumbling, and to present you faultless before the presence of His glory with exceeding joy, To God our Savior, Who alone is wise, be glory and majesty, dominion and power, both now and forever. Amen." Jude 25. Amen!
26 Jan 2002 (Day T+518) W-E-L-L--- It's been a LONG 3 days!!! Never-ending phone calls, not being able to go to work Friday evening, running to the pediatrician's office again Friday and running blood work to the hospital today! That makes me in good whining form today! :) Guess I'd be bored otherwise! Tommy is doing well. He doesn't look sick, I don't think he feels sick, except for having some chills a couple of times and the spike in fever on Wednesday. Other than that, he seems normal. Maybe better than "normal" though, he is more active lately and perhaps this infection could have been brewing for a while, being masked by the steroids. He's been rather sluggish and not real active for the past few weeks and perhaps this was the reason or part of the reason why. Yesterday we had to change IV drugs around. He was getting a broad-spectrum IV antibiotic for coverage initially until the blood culture results came in. He does seem to have something growing in it, some staphylococcus species of bacteria. The lab result will get more definitive as the days go by. Because of the positive blood culture, we've had to have another one drawn, so that took some doing between Duke and our local pediatrician's office, who hasn't seem Tommy in a long time. Tommy's pediatrician does look a lot like "Steve" from Blue's Clues on Nick Jr. He hasn't changed a bit in all these years! Still as skinny as a rail! He's great with kids too. Anyhoo...after doing that yesterday and waiting around for delivery of some IV Vancomycin...Tommy passed out at 6:30p, then wanted to get up to watch TV at midnight! hahahahaha.... Tom watched a show or two, then it was back to bed by 1am. I have a great husband!! Tommy has a great daddy who loves him very much!!!!! This morning we had to draw blood from Tommy's port and take it over to the hospital near the pediatrican's office. Luckily, they didn't give me any kind of hassle about running the test or having to register someplace! It's almost easier to go to Duke sometimes than having to stand on one's head to get stuff done around here, but fortunately we did not have to do that this time. We will be going for our usual clinic visit this coming Tuesday. Tommy did say he liked Dr. K. better than Dr. Strehler because she has "TV"!!! hahahaha... no TV in the pediatrician's office! Poor thing! So deprived!!!! Tommy keeps praying that he's thankful for "hospital TV"!! What a hoot! The kid has a one track mind! We are again mindful and prayerful of Kevin and his parents, Alex Martini (who's website is: www.alexupdate.com), who's relapsed with leukemia for about the 4th time over this past year, Brandon Coker, Alexis, and all those who find themselves engulfed down the road of transplant. " Not that I have already attained, or am already perfected; but I press on, that I may lay hold of that for which Christ Jesus has also laid hold of me....I press toward the goal for the prize of the upward call of God in Christ Jesus." Philippians 3: 12, 14. Amen!
23 Jan 2002 (Day T+515) Today seemed like it should be any ordinary stay-at-home day, like most of the others. Although, when I got up to find Tommy sitting in the living room watching his morning cartoons, he was shivering and said he was cold. He looked kind of pale. A quick check of his temp confirmed suspicion, 101`F. Uh-oh! He didn't act lethargic, like he usually gets with such a fever. He had his speech class without much difficulty. He might have been a little less verbal, but nothing too strange. I sent a quick e-mail off to Dr. Kurtzberg and gave some tylenol to the "Buckaroo". Got some exercise in on the treadmill and finally took a shower, after watching some more cartoons with Tommy. The phone rang shortly thereafter and it was Sue, from Duke, Tommy's nurse practitioner. No, I didn't check my e-mail lately to see Dr. K.'s response, I told her. Sue was having to make sure I knew what Dr. Kurtzberg wanted us to do for Tommy. Well, little did I know we'd spend a few hours in the hospital ER with him!! Our local pediatrician did not want to get Tommy in the office in case he got hypotensive from what they are thinking is a bacterial infection of his blood from his port-a-cath. So, his suggestion was to go to the pediatric ER nearby. They were pretty accommodating, actually. The physician talked with Sue, squared things away on what she wanted done and it flowed pretty smoothly. We were quite paranoid about going to a hospital ER; probably the worst place for a BMT patient to be, with all those germs floating around there! I can tell you from experience that a hospital is NOT a clean place (even if the floors look shiny)! I cringe when I see parents who let their babies crawl around on the floors!!! YUK!!! Anyway, Tommy's fever broke by the time we got to the ER, but he had to have his port accessed there, so they could get the initial blood draw out of it for their culture tube. He received some IV antibiotic and then we received delivery from our home health care agency when we got home, to spend the next three days, at least, giving him more of the same. SIGH! I guess I'm not surprized that this happened. Tommy's been doing pretty well this past week and we were just going to cut down on his steroids...then this happens! hahahaha...just a cruel joke! Tommy's in bed early tonight (a rare occasion)!! He missed out on his usual afternoon siesta. We're hoping that he will be bright and perky by tomorrow and this will all be just another "bump" in the road of transplant. Our thoughts and prayers are continually with Kevin and his parents. Kevin is pretty much comatose now and probably does not have much time left with his family in this world. It has to be so difficult for a parent to watch their child go from "normal" to totally debilitated in such a short time span. Kevin's website is now at: www.caringbridge.com/de/kevinsitu. Another child that needs your prayers is little Miss Alex Martini, who was transplanted in the fall of 1999 (I think she was barely two at the time). She relapsed with cancer cells once before after successful engraftment of donor cells from which she recovered, but once again has developed leukemic cells in her bloodstream. And on top of that, she also has pneumonia. I am unable to bring up her website, so I will try to furnish it, if they still have one, at a later writing. We also received a request from another family to pray for another girl, whom we don't know, named Alexis. Apparently she is also in a fight for her life with a nasty fungal infection also. It sounds like she is being treated in Minnesota. She was transplanted for a disease called "Hurler's Syndrome", which I believe is a genetic deficiency of an enzyme that is usually life-threatening. And there is a young man, also at Duke, named Brandon, who had a successful transplant, only to find out at his 100 day studies that his leukemia is back. His website is: www.caringbridge.com/sc/brandoncoker. Y'all have your work cut out for you now! Thank you for getting on your knees for our children, our heroes! God bless you abundantly! " I wait for the Lord, my soul waits, and in His word I do hope. My soul waits for the Lord more than those who watch for the morning--I say, more than those who watch for the morning. O Israel, hope in the Lord; for with the Lord there is mercy. And with Him is abundant redemption. " Psalm 130: 5-7. Amen! " Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you....But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen. " 1Peter 5: 6,7,10,11. Amen!
19 Jan 2002 (Day T+511) Please continue to pray for our friend, Kevin. He seems destined not long for this world. Our hearts are heavy. Pray for his parents and family. www.geocities.com/kevinsitu. " And I heard a loud voice from heaven saying, 'Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people, and God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying; and there shall be no more pain, for the former things have passed away.' Then He who sat on the throne said, 'Behold, I make all things new.' And He said to me, 'Write, for these words are true and faithful.' " Revelation 21: 3-5. Amen!
16 Jan 2002 (Day T+508) Hi all! Well, we made it through another hospital over-nighter! Thank God we're home! Tommy's esophageal dilatation went well. His doctor was able to open him up from 3mm to 15mm in diameter. Usually it will shrink back down because Tommy doesn't eat orally and it's a muscle, which has a tendency to do such a thing (shrink). This time Tommy had to keep some oxygen on for several hours afterwards. His oxygen saturations would drop rather low because he would not cough out all the secretions in his throat. After a few hours and a lot of encouragement with coughing, he was able to get rid of the oxygen. The highlight of his evening, I'm sure. Actually, the highlight of his whole hospital stay was being able to watch TV from his hospital bed! He still is talking about it! I guess it's a lot better than watching our boring old TV from a chair at home. Go figure! There was a lot of bungling of Tommy's meds. He didn't get any for over 6 and a half hours, mostly because of the inexperience and lack of common sense of the nurse "taking care" of him. I don't think she gave a hoot for anything to do with Tommy since she didn't bother to look for orders until past midnight. Mind you, Tommy was up on the floor since 5pm. Despite that, we got out in one piece, Tommy is talking clearly and we are trying again to use the potty more often than not today. Life is good! Home feels soooooo good! YIPPEE!!! Thank you all for your diligent prayers! They were what got us to Duke Monday morning. Tom and I were both so tired, we could barely keep our eyes open. Tom was driving and nodding off! I was nodding off! We had to leave earlier than we would have because one of Tommy's lab values done Tuesday of last week came back elevated (clotting values). We found this out the Saturday before the procedure, so instead of having to be down there at 11:30am we had to get there at 8:30 or 9 am so they could repeat the test! That meant leaving at "0h-dark hundred", as Tom calls it. So, by the grace of God, we made it safely! Tommy's one clotting value is still higher than normal and Dr. Kurtzberg thinks it's because he is not absorbing vitamin K from his pediasure. Now we have to give him additional vitamin K twice a week. This is all caused by the GVH in his intestines. We will have to wait for the pathology reports to come back to tell if the GVH in his gut is any better or worse. In the meantime, we are on hold as far as reducing his steroid dosage :>( . Tommy's leg muscles continue to take a hit from being on steroids for so long. They are very weak and shaky. Please continue to pray that Tommy's immune function returns this year, that his GVHD will subside, that his esophageal opening stays open for a longer period of time. Continue to pray for Jenna, for Michelle who is dealing with shingles,for Kevin who is trying to fight a fungal brain infection and for all the children of transplant. HIS love has lifted us higher! " By this we know love, because He laid down His life for us. And we also ought to lay down our lives for the brethren....By this you know the Spirit of God: Every spirit that confesses that Jesus Christ has come in the flesh is of God, and every spirit that does not confess that Jesus Christ has come in the flesh is not of God. And this is the spirit of the Antichrist, which you have heard was coming, and is now already in the world. You are of God, little children, and have overcome them, because He who is in you is greater than he who is in the world...We are of God. He who knows God hears us; he who is not of God does not hear us. By this we know the spirit of truth and the spirit of error....We love Him because He first loved us." 1 John 3:16; 1 John 4: 2-4, 6, 19. Amen!
11 Jan 2002 (Day T+503) This past Tuesday was another one of those "marathon" days at clinic...ALL-DAY, ALL-EVENING. We were able to close the place down, leaving around 8:30pm, not getting home til after 11pm and crawling into bed just after 1am. Tommy was tired and cranky and so were we! Then to come home, unload all the gear, try to freshen up Tommy, do skin care, tube care, and draw up about 20 syringes of medication for the next day! Pretty dog-gone tired after something like that. I just don't know why we get "saved" for last when others who get there after us get out before us. We don't mind leaving at 6 or 7pm but after that it's pretty miserable. If we didn't have the drive it wouldn't be so bad. Well, enough of that. Tommy received his Anti-CD 25 IV drug to fight the GVH of his gut/skin. Seems like every time he gets this drug, he ends up with a new set of shingles on his right arm a day or two later. I am almost afraid to tell Dr. K. about it, since she'll increase his medication! Kind of crazy, huh? Being over a year out of transplant, though, we'd like to be going in the other direction with medication (down), not up! I suppose if it doesn't clear up I will have to tell her! Tommy's blood counts were good, but as you know, we are still fighting the lack of immune function here. It is a slow road and I am not the most patient person in the world!!! Some days are worse than others. I think even Tom, who is a patient soul, has gotten less so with all this stuff about us. It is sad to see. We take it out on each other sometimes! Anyway, Tommy will get his esophageal endoscopy on Monday, stay overnight, and stop by clinic so Dr. Kurtzberg can get quick look at him, then hopefully head home. Pray that things look good on the inside. His last 'scope revealed a lot of nasty changes in his esophagus, stomach, and small intestine. Continue to pray for our friends Michelle, Jenna, Kevin, Austin...all those children having to go through transplant. Pray for those who have lost their young heroes. Our hearts go out to them. We are grateful for a loving and merciful God, Who provides us with mercy and grace and a plan of salvation through His Son, Jesus. What great love He has for us! " Therefore, since Christ suffered for us in the flesh, arm yourselves also with the same mind, for he who has suffered in the flesh has ceased from sin, that he no longer should live the rest of his time in the flesh for the lusts of men, but for the will of God. " 1 Peter 4: 1-2. Amen!
06 Jan 2002 (Day T+498) Just a quick note to ask you all to continue to pray in earnest for Kevin who has been admitted to the childrens' hospital at Duke. His symptoms have gotten progressively worse from his fungal brain infection. Pray also for his parents and perhaps leave some encouraging words for them at : www.geocities.com/kevinsitu. Here you can read about Kevin's unique struggle to overcome his rare illness. He is such a bright boy and a very strong one! Many thanks for your love and concern. " As for me, I will call upon God, and the Lord shall save me. Evening and morning and at noon I will pray, and cry aloud, and He shall hear my voice. " Psalm 55: 16-17. Amen!
01 Jan 2002 (Day T+493) HAPPY NEW YEAR ! *! * ! * !* !* ! ! ! ! ! ! ! Well, being home for the holidays has been a real treat! Hopefully it will be more the norm than not. We are thankful to God for allowing us this time together as a family. Tommy had a good Christmas, getting spoiled as usual. He and Nana got to ring in the New Year, so Mama and Daddy could have a great time in Christian fellowship with those of our congregation. It was a great time. We spent a good amount of time playing a game called "jenga" which was quite challenging but very entertaining as well. Time flew by and before we knew it, it was midnight and 2002!!! Tommy is still having good days mixed in with some not so good days. Diarrhea is still a problem. We ask your prayers for him, especially on January 14th, when he'll be having his endoscopy and esophageal dilatation done again. We've lost count as to how many times he's had this done already in his short life. It's just not fair for him to have to go through so much, so frequently. But we deal with it as best we can. Tonight Tommy's blood pressure went quite high and we had to medicate him for it. He started to complain of HA pain and at first I thought it was his sinuses, but it came on rather suddenly. We checked his blood pressure and it was quite high for him. Luckily we had left over BP medication to give him from when he was in the hospital. Steroids will usually do it, but he had been quite stable with his BP even very recently, so it surprised us. We hope this will be an isolated incident, but now we will have to watch his BP more closely. Please say lots of prayers for our friend, Kevin S., who had been having trouble with a fungal brain infection and had not engrafted with his transplant. He has recently started losing coordination in his left hand and then started having trouble moving his entire left side. This is very scarey for him and his parents. Here's hoping YOUR new year will be even better than the last, Lord willing. " Listen to Me, O house of Jacob, and all the remnant of the house of Israel, who have been upheld by Me from birth, who have been carried from the womb: Even to your old age, I am He and even to gray hairs I will carry you! I have made, and I will bear; Even I will carry, and will deliver you. " Psalm 46: 3,4. Amen!
24 Dec 2001 (Day T+486) MERRY CHRISTMAS & A GOD-FILLED, BLESSED NEW YEAR TO YOU ALL!!!! Tommy has been having some rough days still. He has had painful diarrhea for the past week to ten days and is still coughing up a fair amount of mucous. We saw Dr. Treem (GI) last Tuesday and Tommy will be scheduled for another esophageal dilatation on Monday, January 14th at 1pm. He will be staying overnight in the hospital again. He has been enjoying miniscule sips of "juicy juice", i.e., "code red" mountain dew! Usually he'll only sip water, so we're glad he likes the taste of something else. He doesn't get enough of it in him to cause him to be too caffeinated, unlike Mama, who, after two glasses of the stuff, was pretty jittery inside and out! It must have as much caffeine, if not more, than an expresso drink! It is potent! We are ready for Santa to arrive! This will be our first Christmas holiday at our home in the last three years!!!! Yippee!!! (The previous two were in the hospital). Tommy did have some Christmas yesterday as the Burnettes journeyed to Richmond for a family get-together. We all had a good time. Tommy's next trip to clinic will be after the New Year's holiday. We hope to stay away for that long. Please continue to pray for improvement in his health, resolution of the chronic GVHD in his gut, on his hands; pray that he will remain free of infection, especially with winter upon us. Pray for all those who have travelled (and are travelling) down the transplant road with us; for those who have lost their young heroes and those who still suffer with debilitating illness. God bless all of you this Christmas and in the New Year! Thank you for your love and encouragement! We still need it! " Enter by the narrow gate; for wide is the gate and broad is the way that leads to destruction, and there are many who go in by it. Because narrow is the gate and difficult is the way which leads to life, and there are few who find it." Matthew 7: 13, 14. Amen! " In the beginning was the Word, and the Word was with God, and the Word was God. He was in the beginning with God. All things were made through Him, and without Him nothing was made that was made. In Him was life, and the life was the light of men. And the light shines in the darkness, and the darkness did not comprehend it....He came to His own, and His own did not receive Him. But as many as received Him, to them He gave the right to become children of God, even to those who believe in His name: who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God." John 1: 1-5, 11-13. Amen!
13 Dec 2001 (Day T+475) Hi all!! Only ELEVEN MORE SHOPPING DAYS 'til Christmas!!! Guess I'm pretty much done except for some small items. Tommy has been having pretty good days. Sometimes he'll have a day or two where he doesn't feel good, his stomach hurts, and the next day he'll be okay. He has started up with the mucousy slime again this past week. He hates having to cough this stuff out and just holds it in his mouth. You know how we dread this happening again. Dr. K. thinks it is a graft-vs-host disease issue causing this problem, and it may well be, but how often can you put a child through countless endoscopies & dilatations under anesthesia????? She is hoping this new anti-CD 25 drug he is getting will improve this. We will hope with her! Tommy has tolerated being weaned down on his alternating days of steroid use. He gets 15mg one day, alternating with 2.5mg the next. His doctor's goal is to get him to 15mg/0mg every other day. She says this would improve his chances of developing an immune system. Since he is doing better on this anti-CD 25 IV medication, she wants to perhaps keep him on it every week for a while longer to get him down on the steroids. His hands which have been ravaged with sores and flaking, peeling skin show the most dramatic improvement, especially the day or two after getting this IV medication. Hopefully this is an indication of what is happening on the inside of his gut as well...healing! Dr. Kurtzberg also mentioned a new drug she may want to try with Tommy, used in adults right now on a trial basis. Can't remember the name of it, it is supposed to be like a growth factor that causes the keratin, which is essential in skin/nail growth & lining of tissues, to supposedly be increased or produced and cause healing or new tissue/cells to grow. This is Tommy's basic underlying disease "dyskeratosis congenita" that messes up normal tissue/skin/nail growth in his body. This would be an exciting event if this drug improved his overall chronic skin/tissue problems. However, I think she said it hasn't been used in children, but we'll get into more details probably next month, when she said she'd be getting the drug from the company that manufactures it. Dr. Kurtzberg is always on the lookout for her kids. She found this possible source of help for Tommy when she went to a hematology conference. We don't get to see too many of our BMT friends from a year or two ago since they have all moved on to improved health and more infrequent visits. Thank you for your continued prayers for Tommy. Please continue to pray, most importantly, for return of his immune function this coming year and control over his chronic GVH (graft-vs-host) disease problems. God's blessings be yours!!! " ' And she will bring forth a Son, and you shall call His name JESUS, for He will save His people from their sins.' Now all this was done that it might be fulfilled which was spoken by the Lord through the prophet, saying: ' Behold, a virgin shall be with child, and bear a Son, and they shall call His name Immanuel,' which is translated, ' God with us.' " Matthew 1: 21-23. Amen! " And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth. John bore witness of Him and cried out, saying, " This was He of whom I said, 'He who comes after me is preferred before me.' " And of His fullness we have all received, and grace for grace. For the law was given through Moses, but grace and truth came through Jesus Christ. " John: 1: 14-17. Amen!
22 Nov 2001 (Day T+454) " Make a joyful shout to the Lord, all you lands! Serve the Lord with gladness; Come before His presence with singing. Know that the Lord, He is God; It is He who has made us, and not we ourselves; We are His people and the sheep of His pasture. Enter into His gates with thanksgiving, And into His courts with praise. Be thankful to Him, and bless His name. For the Lord is good; His mercy is everlasting, And His truth endures to all generations. " Psalm 100. Amen! Happy Thanksgiving to you all! Happy Birthday to my wonderful husband and a great father! We love you, Tom!!!!
19 Nov 2001 (Day T+451) One day to go until our clinic visit and Tommy is sick again. He's been vomiting, having some belly pain and a lot of mucosy slime come up. I have been alarmed by the collection of mucous in his mouth this morning. I'm not sure why it's there. I am hoping that it is not because his esophagus is becoming occluded again. He had been doing pretty well this week. The BIG fire truck came on Saturday from the fire department. (Two new pictures at the end of the photo album link). They brought the biggest truck there...the ladder truck. It's a monstrous thing and we're surprized they were able to get it into the cul-de-sac where we live. Tommy was up half the night Friday poking at me, making a siren noise, well before dawn wondering if the fire truck was here yet. I was not thrilled about his antics. Saturday morning he kept looking out the front window to see if the truck was here yet. His speech teacher, who arranged the visit, arrived for the event as well. When the time came, Tommy was excited and scared. The truck was HUGE and noisy. It had more gizmos on it and cubby holes for ladders, axes, and gear than one could've imagined. We tried to get Tommy into the truck so we could let him go for a ride, but that did not happen. The firemen did turn the truck off, so the noise was eliminated, but the enormity of the thing just made him literally speechless. One of the men dressed up in his gear for Tommy complete with boots, trousers, coat, oxygen tank and mask. While I sat in the driver's seat, Tom got Tommy up into the front passenger side but he wouldn't sit down, so our hopes of taking a ride were gone. The inside where the driver sits looked like an airplane cockpit, pretty incredible and quite complicated. One of the men told Tom that the truck cost about $700,000!!! After exchanging Frosty the Snowman cookies for presents, we said our goodbyes and thanked them for coming to see our buckaroo. Tommy was a bit overwhelmed but was excited. Later that day, we dropped him off at Nana's so we could have some time to ourselves on our 11th wedding anniversary. We spent the afternoon shopping for clothes for Tom and looking at treadmills (for me!) and ran into a few people we knew while we were at the mall. Later we had dinner with our good friend, L.V., who was our best man at our wedding, then settled in for the annual "cackle", watching Chevy Chase in "Christmas Vacation". This is such a classic show. We just bust out laughing throughout this movie. Actually it is a real treat to just hear Tom and LV howling with laughter at this movie. That in itself is amusement! It was good to have a good laugh. Thank goodness for Nana who comes to our rescue time and again. We'll be off to clinic in the morning. Tommy is feeling better this evening and I hope this was only some kind of stomach or cold bug that goes away and doesn't come back! We hope every one has a Happy Thanksgiving!!! God bless you all abundantly! " Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. " Philippians 4: 4-7. Amen!
14 Nov 2001 (Day T+446) Guess it's been a while since writing on this journal. Oh well. Tommy is "24/7" and then some! Our clinic visit on the 6th was uneventful...Tommy received his first dose of this "anti-CD 25" stuff to try to cool down the GVHD in his gut. This Tuesday, the 13th, we had a good visit. Tommy was feeling good for the past week. He's not had any belly pain lately and his diarrhea wasn't too bad. I hope I haven't spoken prematurely because he's had a LOT of stools today. I feel like a diaper factory. Wish I had one, cuz then I wouldn't have to pay a couple hundred dollars every month for special size diapers for him to wear. All the more reason we will be happy to get his stools under control to where we can successfully potty train him. Dr. Kurtzberg was pleased with his progress and we continue to hope and pray for success of this medication and continued improvement. The biggest surprize of all yesterday was when she came to see Tommy around 4:30 in the afternoon instead of 7pm! We were done by 5pm!!! Truly a miracle in all respects! Tommy is busy cutting and pasting decorations for Thanksgiving. His teacher keeps him doing what he does best! We have a new speech teacher for his homebound instruction and she is doing a great job with him. He is responding to her very well. We are thrilled! All of his homebound teachers are doing a great job with our buckaroo! Tommy has a BIG surprize coming Saturday...his new speech teacher knows some local firefighters and they are bringing an engine over to the house. He has been counting down the days. We hope he doesn't get too scared of it. He has been scared by the enormity of the trucks before, even though he loves to see them. We have been talking it up, so maybe, just maybe, he'll do okay and even go for a ride with them! I know he'd get a thrill to play with lights and the sirens! Guess we'll have to warn the neighbors! That's about it from here! We are still off to Duke every week for a while yet. Keep us all in your prayers. " For this reason, we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding; that you may have a walk worthy of the Lord, fully pleasing Him, being fruitful in every good work and increasing in the knowledge of God; strengthened with all might, according to His glorious power, for all patience and longsuffering with joy; giving thanks to the Father who has qualified us to be partakers of the inheritance of the saints in the light. He has delivered us from the power of darkness and translated us into the kingdom of the Son of His love, in whom we have redemption through His blood, the forgiveness of sins. " Colossians 1: 9-14. Amen! 1 Nov 2001 (Day T+433) Hope y'all had fun on Halloween! We had very few children come to our house Wednesday night and our subdivision was down right dark, an odd sight. After Tommy had his schooling Wed night, he actually wanted to go out door-to-door, so we dressed him up (Scooby Doo, of course) and headed out. The Tooth Fairy came with us (his teacher)! Like I said, the subdivision was pretty "dead" unlike past Halloweens. But we did get to a few houses and hit the "jackpot", so to speak. So many people had a lot of candy left that Tommy got twice the amount than usual. He very much enjoyed looking at the pumpkins too. Tommy has a painted pumpkin named "Slurpy" and has taken it on car rides, slept with it next to him, and watched TV with it. He used to carry it all over the house with him, so much so that we started to worry about what would happen once it started to rot. Well, seems he's gotten past that real connected to it feeling and is on to other things now (we hope). Clinic Tuesday was long as usual. Tommy had his yearly echocardiogram of his heart Tuesday, for which he was a very good boy. It only took us about 15 minutes from start to finish. Incredible! Got back to the BMT clinic and got hooked up to his IV medication then waited on Dr. Kurtzberg. Clinic did not seem as packed as any given Tuesday typically is. We even saw Dr. K. before 6pm! A minor miracle! We had a long discussion with her about Tommy's GVH (graft-vs-host) disease in his GI tract and the steroids that don't seem to be working for him. We talked about different drug options to add to his tacrolimus (immunosuppressant). None are without some awful side effects. You just have to pick the drug you think might work the best for his condition with the least amount of damaging side effects to his body. This is not an easy task. Dr. Kurtzberg, however, is a very smart physician. She thinks things through for Tommy; why one drug might not work as well as some other one. The choices to make are very difficult, but she guides us with her knowledge and we will trust in the Lord to guide us through all of it. We will try a drug called "Anti-CD 25" which specifically targets inflammed or active T-cells to suppress them so Tommy's GI tract can heal. This drug does not always work, however, but Dr. Kurtzberg is not against trying it. Since it is given by IV infusion, we will have to be in clinic every week for a while. If this drug does not cause improvement in Tommy's symptoms (abdominal pain, diarrhea) we will then have to try another immunosuppressant drug called "Cell-cept". The problem with any of this is that Tommy's immune function may not recover for a long time, if at all. We need to pray that we can get his GVHD symptoms under control that allow us to wean him off some of these drugs eventually, and that he will be able to recover his immune function in this next year. Please pray for these things and especially for successful recovery of his immune function in the coming months. He is always at serious risk for an infection that would overwhelm his body's ability to fight it. Also, continue to pray for our nation and for our many transplant friends for whom the road is long as well. God's blessings be yours. " I am the true vine, and My Father is the vinedresser....I am the vine, you are the branches. He who abides in Me, and I in him, bears much fruit; for without Me you can do nothing...If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you. By this My Father is glorified, that you bear much fruit; so you will be My disciples. " John 15: 1,5,7,8. Amen!
24 Oct 2001 (Day T+425) Tuesday we had to go back to Duke's Childrens' Clinic for a post-endoscopy check up with Tommy's doctors. We met the new member of the BMT team, Dr. Mustafa. He seemed very nice, very gentle with Tommy. Dr. Kurtzberg showed us the biopsy results that were taken of Tommy's intestines, which did positively identify that he had Graft-vs-Host disease there. Back to higher doses of steroids now for this next week. If Tommy fails to improve on this, then Dr. Kurtzberg is planning to add another immunosuppressant drug to his already crowded drug regimine. This will delay his getting any type of immune function back any time soon (what's new, huh?!). So, the roller-coaster ride continues. We have been back-sliding more than making any progress these past several months. Trying to keep Tommy free of infection will be of concern, especially going into the winter months. She is also still concerned about where/how he has gotten these esophageal varicies. Even though Tommy had a liver ultrasound last Thursday, we may be doing another one come this next Tuesday, when we'll be in clinic again. Tommy is feeling better today, thanks to the steroids, but is still having frequent, watery stools. Please pray for all these things, that his health will improve, that he will recover immune function during this next year, that he will stay healthy during the coming months. Please continue to pray also for Austin, who is still battling a hemolytic anemia & a bacterial infection (www.caringbridge.com/nc/austinprice). He also had a port-a-cath put in today so they could remove all other central lines. Continue in your prayers for Jenna and her family, especially her brother Gabriel who suffered a devastating back injury. Pray for Kevin S. who is battling a brain fungal infection and homesickness (www.geocities.com/kevinsitu)! And, of course, remember all our transplant friends in your prayers, wherever they may be. Thanks for praying! " Now the man from whom the demons had departed begged Him that he might be with Him. But Jesus sent him away, saying, 'Return to your own house, and tell what great things God has done for you.' And he went his way and proclaimed throughout the whole city what great things Jesus had done for him. " Luke 8: 38-39. Amen! " Therefore, since Christ suffered for us in the flesh, arm yourselves also with the same mind, for he who has suffered in the flesh has ceased from sin, that he no longer should live the rest of his time in the flesh for the lusts of men, but for the will of God. " 1 Peter 4: 1-2. Amen!
20 Oct 2001 (Day T+421) Where to begin? These days and weeks pass by so quickly, we can hardly remember one from the next. (A sign of old age, I'm sure!). We have spent several days at Duke lately. On Friday, the 12th, we visited the ear/nose/throat doctor. He thought Tommy's ears were okay, that his ear tubes might be falling out and that his sinuses were very clear from the CT scan done in September. He did not believe the large amount of mucous that Tommy has been coughing up was from the sinuses or nose. That same day we went to Radiology to see if Tommy could suffer through a Barium Swallow test. He fusses a lot but usually drinks just enough of the stuff for the doctor to see it trickle down his esophagus. This time though, there was no trickle. There was nothing moving anywhere. His esophagus looked totally blocked and the barium was in danger of getting into his lungs. The test was abruptly stopped. The radiologist conferred with Dr.Treem (the GI guy). We then went back up to the Bone marrow clinic for a quick once over and then back home to wait for further news. Monday we received a phone call from Sue, Tommy's nurse practitioner, that he would be scheduled for an esophageal dilatation Wednesday afternoon (the 17th) and he would be admitted to the bone marrow unit after the procedure for 24 hours observation. So, the wheels were set in motion and it was a long, busy, disorganized day trying to find things to pack and not forgetting something important. Just taking Tommy to stay overnight somewhere is a major operation as far as packing goes. To put it succinctly, he requires a lot of gear. And he was having diarrhea. A lot of diarrhea! Anyway, we got past that, got past the dilatation and the overnight stay and we are back home now. But there is disturbing news about Tommy's health. Tommy's esophagus was completely blocked by a thin layer of webbing (caused by his dyskeratosis) over the esophagus. Then the stricture (narrowing) that he has had to be re-opened, since it was also closed again. We weren't expecting the bad news after that though. Tommy now has what are called "esophageal varicies" in his lower esophagus and into his stomach. He also had inflammation and ulcerations consistent with Graft-vs-Host disease in his duodenum (start of the small intestine). Dr. Treem insisted on a liver ultrasound to rule out problems from the blood flow (blockage) in the liver veins causing a back up of blood into the esophagus, causing the varicies (i.e., engorged veins). This news was quite alarming to us. His endoscope this time was totally changed from the one he had done this past May. We were shocked at the changes. Tommy had an uneventful overnight stay on the BMT unit, had his liver ultrasound test performed, and we went home Thursday evening. The ultrasound test apparently did not show any problems with his liver veins but, then, it also failed to show the esophageal varicies. So, we shall see. I am sure they will have more tests up their sleeve for Tommy. We do not think this ultrasound test was conclusive. The good news is: Tommy is not coughing up wads of mucous anymore!!! YEA!!! AND...he can TALK without gurgling!!! YEA!!!! At first we had to tell him he could swallow and that things would go down again because he was still holding his saliva in his mouth. But after some pain medicine and a couple of days under his belt, he is yapping up a storm! It is soooooo good to hear him chatter! And his diarrhea is finally slowing down! What a week! If anyone wants to witness a "survivor" then you've come to the right place. We've got one named Tommy! How long we'll have him, we don't know, but with all he's been through, we can say that he is a pretty special little fella!! Thanks for praying! God bless YOU! " My son, do not forget my law, but let your heart keep my commands; For length of days and long life and peace they will add to you. Let not mercy and truth forsake you; Bind them around your neck, write them on the tablet of your heart, and so find favor and high esteem in the sight of God and man. Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths. Do not be wise in your own eyes; Fear the Lord and depart from evil. It will be health to your flesh, and strength to your bones. " Proverbs 3: 1-8. Amen! 6 Oct 2001 (Day T+407) Is it October already?? Time goes by and I wonder, 'where?', I wonder what we did with our time and if Tommy will ever be able to get out of this "cocoon" again; us along with him. One day sludges into the next, our routine is the same. It has made Tommy a defender of rigidity. Something "new" or a break in the usual routine does not give him comfort. Tuesday we went to Duke for Tommy's last dose of IV Rituximab; the chemo drug to kill off the B-cells infected with the Epstein-Barr virus. His last EBV blood test came back 0.5 copies of the virus in his blood. Supposedly this means he is no longer "infected". I am sure Dr. K. will be checking these EBV levels frequently until Tommy gets some immunity back. We were supposed to be able to skip next Tuesday (yippee!) but now we have to go see the ENT (ear/nose/throat) doctor who put Tommy's tubes in his ears last December. Tommy has been having recurrent ear infections so we will have to make another trip to Duke next week. We have been having trouble getting a time to see this guy when we are at Duke on Tuesdays because he is in surgery that day. He may try to take a culture of his sinuses again. We still don't know the cause of all the mucousy slime in his mouth. Perhaps his esophagus needs dilating again. Perhaps it's damage to his mucosa from previous radiation treatments. Perhaps an infection, but this does not seem to be responding to antibiotics like an infectious process; it is so difficult to tell what end is up sometimes! After seeing the ENT doctor and getting his opinion on all of this, our next step may be to see the GI doctor again. It is a revolving door, all of this chronic illness stuff. (SIGH). On the lighter side of things, we'd like to thank all of you who made our "Buckaroo" a happy little boy by remembering him on his birthday and especially in your prayers! Now he can hardly wait 'til Christmas (getting greedy)! He was certainly in "high gear" that day! In regards to Gabriel, Jenna's brother, I have not talked to his mom since last weekend, but apparently he is home now and his condition still tenuous. Pray for him and his family. Pray for our transplant friend, Kevin, who is still battling a fungal brain infection and loss of his transplanted donor cells. Also keep Austin in mind who was admitted to a hospital in NC for high fever and elevated white blood cell count. Thank you for remembering all of us on our transplant journey by your prayers and thoughts and love. Your encouragement is ours! " But above all these things put on love, which is the bond of perfection. And let the peace of God rule in your hearts, to which also you were called in one body; and be thankful. Let the word of Christ dwell in you richly in all wisdom, teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord. And whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks to God the Father through Him. " Colossians 3: 14-17. Amen! " The Lord brings the counsel of the nations to nothing; He makes the plans of the peoples of no effect. The counsel of the Lord stands forever, The plans of His heart to all generations. Blessed is the nation whose God is the Lord, And the people whom He has chosen as His own inheritance. " Psalm 33: 10-12. Amen! 28 Sept 2001 (Day T+399) Our "Buckaroo" is now 7 years old!! He really had quite a day on Monday, the day we celebrated his birthday! He was wound up all day and all evening. His grandparents were here, an Aunt and an Uncle, several of his therapists from school stopped by, as well as his special ed teacher, and then a good friend, whom Tommy loves, dropped by in the evening to make it a very special day! Of course, he has gotten way too many presents (not in his mind!). We need to add on an extra room or two just to store all of his toys, games and what-not. Suddenly, this house has gotten way too small! Tuesday we spent the day at clinic. Tommy has completed his third dose of IV Rituximab. One more to go. I will be glad when this is over, because they give him IV benadryl and some tylenol, and he is out for hours. The staff wanted to sing "Happy Birthday" to him, but he didn't wake up until most of them were gone! How sad! Tommy would have been thrilled if he had been awake!! Tommy received a Tonka Dump Truck from the staff at clinic! Thank you all so much! He hasn't had a chance to enjoy it yet. He is not sure what to play with first! A very spoiled boy indeed! Tommy's virus (Epstein-Barr Virus) count in his blood was way down from the last count, so this drug (Rituximab) is moving him in the right direction. I just wonder how many times we are going to have to go through this with his lack of immune function (hopefully not ever again!). I am sure Dr. K. will watch him more closely now since he has had this virus re-emerge for a second time. Otherwise Tommy's blood counts are all really very good. We are still fighting the magnesium battle, which will probably be a long term thing, until we get him off his immunosuppressant drug (tacrolimus); whenever that will be! The past couple of days Tommy has been having a low-grade fever and increased oral secretions. Then today he started with ear pain and pulling at his ear. So, back to some antibiotic ear drops and hopefully this will do the job. Dr. Kurtzberg did change his antibiotic from Cipro to Ceftin, so this may not be working as well. We'll see. We may also be seeing the Ear/Nose/Throat physician in the next week or two since Tommy is still having a ton of oral secretions and recurrent ear infections. We are still struggling with the toilet-training process, as Tommy could care less about doing it and I don't have any more ideas about how to get him to change his attitude. Perhaps by the grace of God, one day out of the blue, it will happen. It will be a miracle for sure! He knows how the process works, but he just is rebelling against using it! Like I said....someday...maybe...just maybe, a miracle will happen! Please continue to pray for Jenna's brother Gabriel, and also for our transplant friends around the country and in other parts of the world. Pray for those who've lost their little heroes and pray for the heroes of September 11th. God bless you all! " 'He who would love life and see good days, Let him refrain his tongue from evil, and his lips from speaking deceit. Let him turn away from evil and do good; Let him seek peace and pursue it. For the eyes of the Lord are on the righteous, And His ears are open to their prayers; But the face of the Lord is against those who do evil.' And who is he who will harm you if you become followers of what is good? But even if you should suffer for righteousness' sake, you are blessed. 'And do not be afraid of their threats, nor be troubled.' But sanctify the Lord God in your hearts, and always be ready to give a defense to everyone who asks you a reason for the hope that is in you, with meekness and fear; having a good conscience, that when they defame you as evildoers, those who revile your good conduct in Christ may be ashamed. For it is better, if it is the will of God, to suffer for doing good than for doing evil. " 1 Peter 3: 10-17. AMEN!
19 Sept 2001 (Day T+390) Just a note tonight to update you on Jenna's brother's condition. It is not a lot of detail because his mother, Kay, is exhausted. Anyway, Gabriel had surgery on his lower back this morning. Apparently most of the bone fragments were removed. She does not know if the doctor is confident in having gotten all of them removed. He thought that one larger fragment surely had severed a nerve ending but, by the grace of God, it was still intact. Pain control is a big issue here also. It is not going well in that regard. Sometimes when there are too many hands in a pot, i.e. "residents", nothing gets taken care of because it's always the "other guy" that will do it. A lot of physicians are afraid of pain medication, so they under-medicate. Gabriel is a tough young man according to his mother and even so he is in much pain with what they are giving him now. Their "pain management team" apparently went by the wayside with the budget cuts, so pain control has not been well-managed by anyone. Kay is exhausted with having to stay up nights as well as during the day with him. He is restless in bed because of the poor pain management and cannot stay in one spot very long. This is very unfortunate. Please pray for this family. Give thanks to God that the outcome has been as good as it is, pray for better pain management for Gabriel, and rest for physically and emotionally weary bodies. Will write about Tommy's visit to Duke this past tuesday later. Thank you for your prayers on behalf of all of us! " Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth! The Lord of hosts is with us; The God of Jacob is our refuge." Psalm 46: 10-11. Amen!
16 Sept 2001 (Day T+387) Dear all, Please say prayers tonight for our transplant friend, Jenna, and her family. Her brother Gabriel has been in an ATV accident suffering a serious spinal injury. Two other boys were also involved, one a nephew. He has serious facial injuries requiring approximately 200 stitches and the other is not seriously injured. Pray for these young men and their families. Pray especially for the Sailsbury family, as you may know by reading our webpages how stressful transplant life is and now to have such tragedy like this happen to them! I cannot imagine what they are going through. One thing I am sure of is that they are not without the hope that is Christ. They are such a loving family. Please pray fervently and without ceasing and leave a note on their guestbook to encourage them and give them hope, strength, and the love they need. We love you too. God bless you. www.caringbridge.com/page/jennaswebsite " Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. " 3 John: 2 . Amen!
12 Sept 2001 (Day T+383) As we got ready to leave yesterday morning for NC, my mom called and mentioned the tragedy in the news. I was in a hurry to get out the door, so I quickly flicked on the TV and saw pictures of the WTC building burning. I had no time to dawdle, so I went out the door to the van to where Tom was waiting with Tommy. Little did we know on this fateful Tuesday that things would just get terribly worse. We listened to the radio in disbelief as plane after plane demolished some building. Tommy, of course, was totally forlorn about not being able to watch TV and slept most of the way to Durham (a first!). After getting to clinic, we waited about 2.5 hours before they even started Tommy's Rituximab infusion. They had to premedicate him with tylenol and benadryl, so he slept some more after that. We learned that Tommy's immune function is still pretty negligible (i.e. "zero"), so there was no way out of the Rituximab. We will have to make trips weekly now to Duke for this IV drug that will hopefully prevent the recurrence of a lymphoma-like disease caused by the Epstein-Barr virus. We thought this year we'd be able to have Tommy's birthday at home, instead of in a hospital/clinical setting. I guess we will celebrate even though it won't be on his birthday because his birthday falls on...you guessed it...a clinic day! Well, we are grateful that we are home most of the time! Tom's ability to get into work at Fort Lee was hampered by 2 hours today, waiting for his car search to be completed. They are still on the highest level of security out there. Please pray for those who lost family, friends, loved ones in these terrorist acts. Pray for our leaders in government that they will be guided to do the right thing. Thank you for your continued prayers for Tommy and for us. We need them! " And do not fear those who kill the body but cannot kill the soul. But rather fear Him who is able to destroy both soul and body in hell. " Matthew 10: 28. Amen! " But let none of you suffer as a murderer, a thief, an evildoer, or as a busybody in other people's matters. Yet if anyone suffers as a Christian, let him not be ashamed, but let him glorify God in this matter. " 1 Peter 4: 15-16. Amen! " The Lord is righteous in all His ways, gracious in all His works. The Lord is near to all who call upon Him, to all who call upon Him in truth. He will fulfill the desire of those who fear Him; He also will hear their cry and save them. The Lord preserves all who love Him, But all the wicked He will destroy. " Psalm 145: 17-20. Amen!
9 Sept 2001 (Day T+380) Friday, Dr. Kurtzberg talked with Tom about Tommy's EBV (Epstein-Barr Virus) DNA blood studies done this past Tuesday. It was rising, the level up to 108 from 73 two weeks ago. This puts Tommy in danger of developing the lymphoma caused by out of control B-cell proliferation due to his lack of immune function (T-cells). Her plan is to give Tommy a chemotherapy drug called Rituximab that specifically targets these B-cells. We will now have to spend every Tuesday down at Duke's childrens clinic for this treatment for at least the next four weeks. Our only possible "out" from this treatment is if his immune function studies done at the end of August show considerable improvement in development of T-cells and their ability to function (fight infection). Dr. Kurtzberg will be discussing this with the immunology lab tomorrow (Monday). We are holding onto this hope, but we know that delay in treatment could also make him a very seriously ill boy. We don't want to have to go through that again. Tommy spent 3 weeks on a ventilator (breathing machine) because the lymphoma invaded and occluded all the tissues around his airway. Unlike last December when he felt poorly most of the time, he has been feeling very good lately, except for being a bit more tired than usual. His energy level has been great these past few days. But, I guess it can all be deceiving. Please pray fervently for Tommy's health, for much improved immune function, for wisdom for the physicians who treat him, for strength for him, and for guidance and comfort from above for us. Pray that we will not be tempted by discouragement, frustration, anger and fear but that we will be lifted up by your prayers to know His grace and mercy. Thank you all! " But God, who is rich in mercy, because of His great love with which He loved us, even when we were dead in trespasses, made us alive together with Christ....For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them. " Ephesians 2: 4,5, 6-10. Amen! " Not that I speak in regard to need, for I have learned in whatever state I am, to be content: I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. I can do all things through Christ who strengthens me." Philippians 4: 11-13. Amen! 5 Sept 2001 (Day T+376) Our day at clinic started out with Tommy going to CT scan. We were praying that our son would be calm and let them take these pictures of his brain, sinuses, neck, chest, and abdomen. He has come a long way. He is wise in the ways of a hospital, unfortunately. Thankfully, with a lot of talking and hand holding, Tommy laid very still on the table as it moved in and out, up and down. He was so brave and such a big boy! We were very proud of him. The whole thing took us about an hour down there. The pictures did not take that long, but the preparation did. We went up to the BMT clinic after that and lingered for a while until the staff was ready to infuse his IVIG. Then his speech therapist showed up and despite being rather sleepy he did a pretty good job with her. Next came the usual long wait to see Dr. Kurtzberg. Tommy had a nap in between blood pressure and temperature readings. It wasn't until about 7:30 or 8 pm that we saw the doctor; last again. They apparently had about 32 kids in the clinic today and I'm sure some of them showed up after we did, but we were still shuffled to the end of the line again. I am really getting tired of getting home so late. The news we received was mixed: Tommy's CT scan was mostly negative except for two "little" lymphnodes seen in his neck on the scan. Then my fear was increased when she said his EBV (Epstein-Barr Virus) DNA blood test came back with 73 "copies" of the virus detected in his blood stream. This virus is what put Tommy in the pediatric intensive care unit on a ventilator for 3 weeks back in December of last year. A number over 50 indicates an active infection of the virus. He had tested 0 copies of the virus back in May. Now this. This study was done 2 weeks ago when Tommy was still rather sick, mostly just to "appease us". This explains his continued tiredness despite antibiotics. After telling us this, they drew another EBV blood sample to be sent off to California so she can have another reference point. Pray that this number will be lower and that Tommy's body can fight off this virus. If not, we may have to go back to Duke every week for about a month to give him the chemo drug Rituximab again. This would cause another setback in developing his immune system. The "good" news was that they thought his mouth looked better, so 6 more weeks of antibiotic therapy. (No results from the mold/fungal cultures and sensitivities yet.) Despite that, he is still raising a lot of thick mucous most of the day. We hope this will not be a chronic problem. We enjoy hearing him "talk" and with this mess in his throat/mouth, he can't even do that. Also, we will be trying a new magnesium supplement in his diet that may help us get him off the daily IV stuff. The skin around his portacath is getting quite reddened and taking a beating from being accessed every week. Tommy started another year of "homebound" schooling. We will rejoice in the day when he can return to school & church activities, to be with other children his own age, and develop some friendships. It has been a rather lonely and isolated road for him these past years. Please continue to pray for Kevin S. who is still fighting a fungal brain infection and failed transplant. Continue to pray for our friend Jenna who has returned to the real world of high school this year after missing her middle school years. She is still dealing with bone and hormonal problems. Pray for all those parents who won't have a child returning to school this fall. Pray that God will give them special strength and guidance in their lives. Thank you for your prayers, for remembering Tommy and his needs and all the children of transplant. God's blessings be yours! "Therefore, since we have this ministry, as we have received mercy, we do not lose heart...For it is the God who commanded light to shine out of darkness who has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ. " 2 Corinthians 4:1,6. Amen! " Lord, You have been our dwelling place in all generations. Before the mountains were brought forth, Or ever You had formed the earth and the world, Even from everlasting to everlasting, You are God." Psalm 90: 1,2. Amen! 30 Aug 2001 (Day T+370) Tommy is perking up a bit after adding another antibiotic to his already full medication regime. He is still running fevers off and on, but his energy level is slowly increasing, so that is a good thing. He has stopped complaining of belly pain and the ear drainage has dried up. We were close to going to Duke tuesday but, by the grace of God, we were able to avoid it. Tommy has passed the year mark of his third successful transplant anniversary! We still have a long way to go but we are grateful for the wonderful news of "100% donor cells" report we received yesterday. No host (Tommy) cells seen in any cell lines! We wonder how he has kept going, perservering. He is a strong little boy but being sick so often for most of the summer has taken a toll on his usually happy spirit. Please continue to pray that this antibiotic continues to cause improvement in Tommy. Pray also for the body CT scan next tuesday to be without any evidence of infection in his organs and that Tommy will be calm and cooperative for this. Thank you all for your continued steadfastness in prayer for our buckaroo! It means so much! "Then Jesus spoke to them again, saying, ' I am the light of the world. He who follows Me shall not walk in darkness, but have the light of life.' " John 8: 12. Amen! 24 Aug 2001 (Day T+364) Tommy has been feeling very under the weather the past two days. He has been lethargic, pale and lacking energy. He's been complaining of his belly hurting again and having a lot more stools and some vomiting. Today, as I tried to clean his right ear, I found green pus on the Q-tip. So, after talking with the bone marrow folks at Duke we were on our way to the local pediatrician's office. It had been two years since we'd been there with Tommy! Incredible! His regular pediatrician wasn't there, but I'm sure when he sees him next, he will be amazed at how big he is. The doctor there took cultures of the drainage in his ear for bacteria and fungus and then sent us home with antibiotic ear drops. Tommy still has tubes in his ears from last December when he was in the PICU at Duke. This is how the drainage was able to get into the ear canal. Unfortunately for us, Dr. Kurtzberg is out of the country for a week (in Japan!). Our buckaroo is not sleeping well because of the stooling, coughing up mucous and/or vomiting, or because of his belly discomfort. We just wish he would start having more "healthy" days like he used to instead of all these bad, yukky feeling sick days! That's it from here, for now. Pray for healthier days! 21 Aug 2001 (Day T+361) Today we were at clinic for an awfully long time. The place was like a zoo!! Lots of children, crying children...all day long; almost non-stop crying. It was tough to be empathetic with a headache. Finally by 6 or 7 pm, all the crying children had left. Not sure why so many were in such distress. Usually hearing a child cry lasts a few minutes, then it's over. Not so this day. I guess there were some who were whining-crying and not outright crying, but all the same, it was not easy to listen to. I can hardly stand listening to Tommy when he starts up, mostly because he doesn't want to sit on the toilet or something that doesn't require crying, only annoyance. I've gotten used to that now, but it rattles me down inside. But, we finally made it home by 11pm. Just in time to get Tommy in bed, finish all our "medical" duties then try to pass out in bed ourselves. Unfortunately Tommy's culture from his mouth is growing 1 fungus and 2 types of mold species, yet unidentified. SIGH. We're told it will take a week to ten days to figure out drug sensitivities after they have specifically identified the organisms. Not what we wanted to hear. Hopefully he has not become resistant to the antifungal he is already on. They will test for this. His blood counts, thankfully, have remained very good. He did have a lot of blood drawn for his 1 year studies; A LOT of BLOOD! We will know some results in about a month. This will give us more information on his immune function and if he still has mostly donor cells, and other things. We are continuing to decrease Tommy's steroids slowly, as long as he is not symptomatic with issues like nausea, vomiting, diarrhea, rashes, pain, etc. His skin has still been an issue; cracking and peeling over both his hands that just won't seem to heal. We are trying another new medication again this week, although I found it has alcohol in it, so how great can that be? Guess I'll try it, but it may have been a waste of money. Dr. K. must not have realized it had alcohol in it when she prescribed it for him. Tommy continues to cough up large amounts of mucous, day and night. He is a bit fatigued lately, wanting to take a nap and go to bed more readily than usual. I caught him asleep in his chair in the living room this afternoon, head back and eyes closed! THAT is incredible! He must be affected by this infection he has. There is no way Tommy would ever be ready (or willing) for a nap so early in the afternoon or pass out so quickly. I hope and pray that these culture results come sooner rather than later. He is also scheduled for a CT scan of his brain, sinuses, neck, chest, liver, kidneys in two weeks; the tuesday right after labor day. Pray that he does not have any fungus or mold or anything growing anywhere else. I am trying not to be anxious about it and put it in the Lord's hands, because it is anyway. I just need to dwell on that reality, because our busy lifestyle rarely gives us time for reflection. Giving my anxiety up to God is not an easy task since we've had to "worry" for years now. Practice has not made perfect. Thankfully, I'm married to a wonderful Christian man, who has the optimistic outlook to keep me balanced in life (now that's a chore)! He definitely is a true blessing from God! Other than that, we are gearing up for another Tommy birthday, coming next month. It will be another event where stimulation (i.e. "present") overload is sure to be a problem. Now, if I can only find that Bob the Builder birthday cake somewhere! hahahaha.....Thanks for all your continued prayers! Thank you especially to all the children who have prayed for Tommy throughout these years and have sent him such nice cards! He gets so excited to find something in the mail for himself! Please continue to pray for our other transplant friends and all those children who have to suffer with such nasty diseases. Pray for our new found friends at clinic, Helen and Kevin S. Kevin has a genetic immune disease and was transplanted earlied this year, but has lost his donor cells and is fighting a fungal infection in his brain. His parents are uncertain what path to take as far as transplanting him again or not. Please pray for them. It is such a heart-wrenching decision to make, no matter which road you choose to take. God's blessing's be yours each day! " I thank my God, making mention of you always in my prayers, hearing of your love and faith which you have toward the Lord Jesus and toward all the saints, that the sharing of your faith may become effective by the acknowledgment of every good thing which is in you in Christ Jesus. For we have great joy and consolation in your love, because the hearts of the saints have been refreshed by you, brother." Philemon 4-7. Amen! 7 Aug 2001 (Day T+347) "D-Day": It's easy not to miss life at clinic, especially after being home for three straight weeks. We waited a good long while today, just waiting to get seen by Dr. Kurtzberg and Sue. It didn't look that busy, but apparently they had a lot of kids in earlier in the day and a lot of surgical procedures as well. We made it home by 10pm tonight. At least Tommy passed out on the bed in the clinic this afternoon. He usually fights taking a nap there, but not today. He is still coughing up a large amount of thick mucousy phlegm every hour or so. Seems the Bactrim he's on has helped somewhat, so we have continued that for a three week course for now, in case it may be a sinus infection. If they rule out a sinus infection and he's still coughing up all this mucous, we'll be seeing the GI people again. The cracking, peeling and open sores on his hands are not healing and we're not sure why. We're trying different things on them. His mouth has developed raw mucous membranes and some whitish coating on his palate, perhaps Candida (thrush) or a Herpes virus. Being on a rather large dose of Acyclovir, we are hoping he has not developed some sort of resistant bug in his mouth. This could be bad news. They did a culture of the roof of his mouth (or rather, I should say, I did!) and we will hear if anything is growing there in about 3-5 days. Dr. K. has increased some of his drugs and decreased others. It is a delicate balancing act with Tommy. He is not your typical transplant case, nor is his disease. It has been difficult to make any significant progress lately. Tommy is also still having epigastric pain and we're not sure why that is either. He has been on some potent anti-reflux medications and gastric acid inhibitors. All of this is very frustrating to us. It is difficult to have any semblance of a "normal" lifestyle. There is nothing "normal" here. We are still looking at perhaps up to another year in "isolation", in "no man's land", whatever you want to call it, because Tommy's immune function will still be suppressed for a good while yet, or so we've been told. When I ask questions about infections and super-resistant bugs and they can't guarantee our son a future, it sends panic up my spine. It just brings back all those horrible memories and choices that we've had to face when we were told our child doesn't have much of a chance to survive his disease without transplant and then even with transplant he could still die. The fear is still buried deep down inside. I wish I could bury it forever and forget about it, but there are no guarantees in life for Tommy or for anyone. The only guarantee we have to hang onto is the promise Jesus gave us. He is our hope and we will trust in Him. He is all we have. " Hold fast the pattern of sound words which you have heard from me, in faith and love which are in Christ Jesus. That good thing which was committed to you, keep by the Holy Spirit who dwells in us....You therefore, my son, be strong in the grace that is in Christ Jesus....Consider what I say, and may the Lord give you understanding in all things." 2 Timothy 1:13,14; & 2: 1,7. Amen! 29 Jul 2001 (Day T+338) Just a note to let you all know that Tommy is doing pretty well. He still is coughing up a lot of thick mucous and we're not sure why or what the cause of it is. Hopefully it is not related to his esophageal stricture. We wouldn't want to have to go through another dilation so soon. Thankfully his shingles on his arm have totally disappeared. We are having to put a lot of medicated creams on his hands because they are cracking and peeling to the point of being very "ouchy". We don't know whether this is from some graft-vs-host disease skin problem or whether it's from his primary disease, Dyskeratosis congenita. Tommy has gotten into watching the "Andy Griffith" show on Sunday nights and it is fun for us to watch as well! It's a lot more relaxing than some of these other crazy cartoons and shows that are on. You can be guaranteed of a good laugh and being able to relax together. Since we are so isolated & "homebound", Tommy really loves when his teacher comes over, his OT, Speech, and PT as well. He does get to go to school once a week for his PT during the summer, since hardly anyone is there. From all accounts, I've been told that he "runs the place". He has lots of energy when he is there and thrives on the attention he gets while he's there for his session. He gets to visit the principal and the office staff who spoil him terribly. That is usually the highlight of his week. He does his physical therapy so much better out there than he does staying here at the house. He will probably be upset when he learns he has to do his PT here at home during the school year! We will be excited when we can take him to church or even to the mall. Life is no where near "normal" and it is a struggle to maintain sanity some days, much less a lighthearted spirit. We are hoping Tommy will tolerate the weaning of steroids this time around. They will have to wean him a lot slower though since he had problems with this just recently. That's all from here folks. Take care and God bless you!
17 Jul 2001 (Day T+326) Hi all! Thanks for looking in on us. Keeping Tommy "healthy" has been a problem lately. He has been having difficulties each week for about the past month and these past two weeks have been no different. Two weeks ago we were given the go ahead by Dr. Kurtzberg to drop Tommy's steroid dosage to 1 mg every other day, a really minor dose, almost totally off the stuff. We were excited. Being off steroids would get us off some of the other drugs Tommy is having to take. Our joy was short-lived. The day he went off a dose of the steroids was the day he started with more GVH symptoms: nausea/vomiting/diarrhea/bloody stools. So back up on the steroids, 10mg a day! Guess it could be worse. He has recovered from those symptoms being on that dose of steroids. Then, this past Wednesday, the buckaroo woke up with a rash on his right arm and blisters. HMMMM...Thought that might be GVH rash too, but the steroid cream for his skin didn't do anything to improve it. Then it started to spread and get really dark red in color, and it was itching. Dr. Kurtzberg decided it was probably Herpes Zoster (shingles). Now Tommy has never had chicken pox, which is how the virus still in the body can cause shingles. BUT!! Big Tom, whose blood cells Tommy now has, has had chicken pox AND shingles!!! So, that is how little Tommy has run into this virus. He is doing okay with it. His doctor increased his Acyclovir, the anti-viral treatment for this, which he was already taking as a "preventative maintenance" dosage since transplant. The rash and blisters have gotten a lot better in just one day of the increased dosage. So that is good news. Today we were at clinic for his usual IVIG medication and a check-up. Tommy's blood counts were great. His lymphocyte count is increasing and was actually in the normal range for the first time today. Even his magnesium level was almost in normal range!! Seems like he is absorbing his meds better with this GVH of his gut under control. We hope this good progress continues. Even better news is that we will not have to return (we hope!) for another THREE weeks!!! Yippee!!! I won't get tooo excited though, because as a transplant family, you always have to expect the unexpected. That is the reality every transplant family lives with each day. We had a great "reunion" with some of our transplant friends today while at clinic. Michelle was there looking like a gorgeous 18 year old headed for college. We saw Amir who is running and playing and full of life after two transplants, viral meningitis and seizures. Jenna was there looking like a typical 13 year old enthusiastic about life; no crutches, nothing. I lost count of the people who would come up to them and say, "You look sooooo good!" or "I didn't even recognize you!". It is an incredible turn around after seeing these children during transplant with their bodies disfigured and bloated from high dose steroids, with no hair, in pain and miserable. Most, including Tommy, resembled some type of bloated "cone-head". That's what always came to my mind. It may sound "funny" but it is the sad reality. But the best side of this reality is when you can see these children looking "normal" again, with normal hair, normal body weight, big smiles. That's the very best part. Even though they may still have lingering problems post-transplant, having normal cell counts and being disease-free, makes them realize these present problems are smaller than facing death on a daily basis. I would love to sit them all in a room together and listen to them talk about their experiences through transplant. That's one thing we can't do with Tommy. And it may be a good thing, something he would just as soon forget anyway! Please pray for our friend, Austin. He is over 100 days post-transplant but his hemoglobin keeps dropping because his body is attacking the very red cells it is making. They are very frustrated and homesick, not knowing what to expect. There is never enough patience to be had by transplant families. Just when you thought that you could not possibly take anymore anything, you have to. And it never gets any easier to wait longer, to be even more patient. But then you look at the positive things: your child is alive, he is not on any IV meds, or his meds have been cut way back, or his platelets are great, or he's eating more and gaining weight now, etc, etc, etc.... I know you all will never be able to understand all of this transplant stuff unless you've gone through it yourself with your child and I wouldn't wish that on anybody, ever. It is not an easily understood thing. It is not normal. And please, don't ever mention the phrase "Hang in there" to me because I have heard that for the past 2 years straight and cannot stomach it any longer (just had to get that off my chest!!!)! Thank the Lord for your health and your children's health. It is something taken for granted by many. On top of all the transplant ups and downs are the "normal" daily realities to live through. We have had more sad news in this family, that Tom's aunt has passed away quite unexpectedly on Sunday. Thank you for your perserverance in prayer. Be faithful to God and His Word. " By this we know that we love the children of God, when we love God and keep His commandments. For this is the love of God, that we keep His commandments. And His commandments are not burdensome. For whatever is born of God overcomes the world. And this is the victory that has overcome the world--our faith. Who is he who overcomes the world, but he who believes that Jesus is the Son of God?" 1 John 5: 2-5. Amen! " Oh praise the Lord, all you Gentiles! Laud Him, all you peoples! For His merciful kindness is great toward us, and the truth of the Lord endures forever. Praise the Lord! " Psalm 117. Amen! 4 Jul 2001 (Day T+313) Happy 4th of July!!! Hope y'all are having a great day off! We are trying to recover from a rough couple of weeks. Had our usual clinic visit at Duke Children's yesterday. Tommy has been acting less than "normal" since Monday and has been running some fevers. Of course when we were at clinic he was acting fine and had nothing but a low-grade temp. Last night after we got home his fever climbed to 101.6`F. He has been complaining off and on about his belly and occasionally about his throat being sore. It is quite hard to tell with Tommy because he is less than reliable with communicating what is really going on with himself. So it ends up being more of a guessing game and is a rather frustrating way to manage things. We have come to dread the holidays because Tommy always manages to be sick around them. This holiday turned out to be no exception. Dr. Kurtzberg did increase Tommy's tummy medication, hoping he is just having some gastric irritation. But he has had some black stools, indicative of old blood, of which we don't know the cause. His hemoglobin was also 2 grams lower than two weeks ago which could indicate bleeding some where. So on it goes. He hasn't been having diarrhea or vomiting, at least not as of tonight. He did show an increase in his lymphocyte count which means he's making more of his own T-cells to fight off infection. His counts are by no means in the normal range, nor is their function normal yet. The T-cells have to mature and hopefully when they do they will protect Tommy from infection without attacking his other organs or tissues. We are weaning his steroids some more as well. This will help increase his lymphocyte count and encourage immune function to return. His tongue and mouth, however, without the steroids are looking pretty sore and awful. If there were some drug to keep his tongue from being ulcerated and sore without the side effects, life would be grand. However, I guess it is not meant to be. This is why Tommy cannot eat orally. So, we will wait and watch and hope and pray and continue on in the faith. Take care. God bless you and this land that we live in called America! " And because He loved your fathers, therefore He chose their descendants after them; and He brought you out of Egypt with His Presence, with His mighty power, driving out from before you nations greater and mightier than you, to bring you in, to give you their land as an inheritance, as it is this day. Therefore know this day, and consider it in your heart, that the Lord Himself is God in heaven above and on the earth beneath; there is no other. You shall therefore keep His statutes and His commandments which I command you today, that it may go well with you and with your children after you, and that you may prolong your days in the land which the Lord your God is giving you for all time." Deuteronomy 4: 37-40. AMEN!
27 Jun 2001 (Day T+306) We are sad to say that Tommy's "GaGa" (maternal grandfather) passed away rather suddenly yesterday morning. What's even sadder is that Tommy is quite clueless as to what has transpired. He loved his "GaGa" very much and would follow him around, helping him in whatever way he could. He loved to borrow his cane and his old "geezer" hat every time he visited. Tommy was very sensitive to his not feeling well and did all he could to make him laugh and make him happy. For Tommy it was an easy thing to do. Our "Buckaroo" is doing very well lately. He has a lot of energy, is sleeping well again at night and is enjoying his homebound "summer school" (so is Mommy!!). He even snuck a bowl full of Nana's tootsie rolls and tried to microwave them for 48 minutes while Nana was in another room!! He could not contain himself when Nana figured it out. Thankfully he did not burn anything up. Hope y'all have a cool week; it is very hot and humid here in sunny ol' Virginia. 21 Jun 2001 (Day T+300) What a difference a day (or two) makes! Tommy has made marked improvement since Tuesday. He has perked back up and has more energy than a jumping bean going full steam all day. Some of this "energy" is probably due to the increase in steroids they have given him for the past couple of days. We are going to be cutting back on the dosage over the next few days to get back to the amount he was on previous to this illness. His vomiting has quit but he is still having some diarrhea, not too bad though. He enjoys wearing those diapers so much it may just tear me up to get him back on the potty again (not!)! It is good to see him full of fun again. All of his cultures have come back negative, so thank you all so much for your prayers! Tommy will still be getting homebound schooling during the summer, thankfully. Please continue to remember Tommy, Jenna, Austin, Amir, Jasmine, Maddy, and so many other children who have walked down the transplant path. 'Tis a long, winding journey indeed! " Praise the Lord, O my soul! While I live I will praise the Lord; I will sing praises to my God while I have my being. Do not put your trust in princes, nor in a son of man in whom there is no help. His spirit departs, he returns to his earth; In that very day his plans perish. Happy is he who has the God of Jacob for his help, whose hope is in the Lord his God, Who made heaven and earth, the sea, and all that is in them; " Psalm 146: 1-6. Amen! 19 Jun 2001 (Day T+298) OKAY! OKAY! So it's been TWO whole weeks since the last entry! It's been a mostly good two weeks, never a dull moment, but a good two weeks. The past 3 or 4 days however have not been so good. Tommy has started all over with what seems to be another GI "bug" and he's been complaining that his throat is sore. Fortunately today was our usual clinic visit and fortunately Dr. Kurtzberg was there. We missed Sue, our nurse practitioner, who had the day off. Potty training had been going well up until yesterday when Tommy started having "accidents" on the carpet! No ordinary accidents are these because some of the medication he takes turns his urine and stool a nice orange color that permanently stains. We will probably have a "calico" carpet by the time we can claim any kind of victory in this area. Anyhow, the buckaroo had thrown up a couple of times each day for the past 3 days or so, nothing to really alarm us. Then last night the frequent stools started and some more vomiting today. We had trouble getting out the door at a decent hour (to leave for Durham) with all the cleaning up we had to tackle. We made it to clinic without vomiting or diarrhea in the car (thank you God!) and Tommy cooperated quite quickly thereafter with stool specimens for all!! He was ushered swiftly (a novelty there) into the "Rainbow Day Hospital" (i.e. clinic) where he received a variety of IV meds today: IVIG (immunoglobulins to help fight infections), an IV fluid bolus, additional IV magnesium because his level was still low despite all our efforts here to keep it up, some more IV fluid, a dose of IV steroids, and a couple of rounds of IV antibiotics squeezed in between all of that. Needless to say, we didn't get out until 7pm. There was even talk of having us stay overnight in Durham. I think Dr. K. would have liked that, but we had none of Tommy's meds with us except what we brought for the day. (Does she think we cart all of them around with us??!!!) So, they loaded us up with IV fluids to run at home tomorrow should he need any, a dose of IV steroids to boost his ability to fight off this infection, and a dose of IV antibiotic. We also have to increase his oral anti-viral medication in case he has a herpes-simplex virus lurking in his mouth/throat. Dr. K. noticed his tongue was bleeding and the back of his throat looked inflammed, so she did a "herpes" swab culture to test for this. Hopefully this will not be what is causing his discomfort. She also mentioned that he could have strep throat but it was too late to do a throat culture since he had been given IV antibiotics. Please pray that his cultures come back negative from his stools samples, his blood culture, and this throat culture. Pray also that he responds to the current treatment and improves each day. Right now he is only tolerating clear liquids in his gastric tube, vomiting with anything else. We hope we will be able to increase the strength of his feedings back to a normal regimen within a day or two. If he keeps vomiting and having diarrhea we may have to end up going back to Durham. Right now he is putting out whatever we put in him. (So much for being able to concentrate on taking recertification tests at work tomorrow!!) It looks like it'll be a long and sleepless night, he is still having diarrhea. We saw Austin and his parents at clinic. They are feeling puzzled by their son having developed multiple antibodies against his own red blood cells. His hemoglobin keeps dropping and he keeps developing more and more antibodies that destroy his red cells. They think the IVIG may have caused this, but his parents aren't really sure. Last week his hemoglobin dropped to a life-threatening 4.6 grams and they had to wait almost half a day before they could find a unit of blood to match him. Please pray for him. We also saw Amir and his parents. He continues to look great and improve after having gone through so much, including viral meningitis. Jenna continues to need prayer for healing of her bones from the ravages of chemotherapy and post-transplant complications, as well as for her hormonal imbalances which have been difficult to control. Hilary lost her long battle with post-transplant complications, as did our good buddy Chris Secord, and Heaven McIntire is having to struggle to breathe as she is battling respiratory failure. So much for such young children to have to suffer! Thank you Lord for their examples of grace in the face of such terrible suffering; in their long battles to have a "normal" life, to be a "normal" child! Father God be merciful unto them. Help us, Lord, to be the parents we need to be to continue the struggle with them and when we fail at it as well. Lift us up when we fall, when we fail to be what they need us to be. Thank you for your love and support through prayer. We continue to need it on a daily basis. " The Lord is gracious and full of compassion, slow to anger and great in mercy. The Lord is good to all, and His tender mercies are over all His works. All Your works shall praise You, O Lord, and Your saints shall bless You. They shall speak of the glory of Your kingdom, and talk of Your power, to make known to the sons of men His mighty acts, and the glorious majesty of His kingdom. Your kingdom is an everlasting kingdom, and Your dominion endures throughout all generations. The Lord upholds all who fall, and raises up all those who are bowed down. The eyes of all look expectantly to You, and You give them their food in due season. You open Your hand and satisfy the desire of every living thing. The Lord is righteous in all His ways, gracious in all His works. The Lord is near to all who call upon Him, to all who call upon Him in truth." Psalm 145: 8-18. AMEN!
6 Jun 2001 (Day T+285) Tuesday was a very good day at clinic! Tommy has been feeling very well since last Wednesday. The change in him when he feels well is amazing. It is good to see him doing things he used to do and not wanting to lay down all the time. In case you missed the last entry, there are six new photos to see in the "Photo Album" section. We were also pretty excited to get Tommy to use the toilet at the clinic. He went twice, although using it to sit on was a bit of a "scream," shall we say! He intensely dislikes having to sit on the toilet. Must be a "guy" thing! Anyway, we were very proud of him despite the screaming! Tommy's HLA donor studies came back showing greater than 99% donor cells; none of his own original host cells could be detected. This is extremely good news!!! Thank you God!!! His immune studies,though,were about where they expected him to be, very low. He does have some B-cells and NK (natural killer) cells in sufficient quantity, but he has very few T-cells that are responsible for most of a person's immunity. This is due mostly to the immunosuppressant drug he is still on and will be on for several more months to come. It will have to be very gradually tapered down. Then they will have to watch for graft-vs-host disease, where the new T-cells may attack Tommy's organs/tissues as foreign. Hopefully this won't happen, if it does Tommy will have a very prolonged course of therapy. School will most likely be at home again next fall and winter. Dr. Kurtzberg said if Tommy gets more immune function back by then it's a possibility he might could go to school in the spring, after the 'flu season is over. We will have to wait and see. We are just hoping to be able to stay out of the hospital and at home for the next year. That would be a BIG achievement in itself! Tommy is almost off his steroids, perhaps by next month he will be completely off of them. We are still having problems with getting insurance reimbursement for tacrolimus (immunosuppressant drug) from my insurance company. Dr. Kurtzberg, who always has a camera crew from somewhere following her around, has threatened a 60 Minutes interview about it. I hope they work things out before our next visit (when the camera crew is supposed to be there)! We actually got out of clinic "early" yesterday, about 5pm, and made it home before the thunderstorms hit. That was another good thing. We were able to visit some with Austin's parents and Julia's parents. They are both having to "hang around" Durham for a while longer until things are right for them to go HOME home! On a sadder note, we have just found out that Hilary has passed on from this life after a long and heroic struggle from the grips of cancer. Please pray for Hilary's soul and for her family. Pray for the Secords who lost their son Chris last week. We had heard that his parents will be volunteering at the Duke clinic or the bone marrow unit and that in itself will be good for them and for the families there. Pray for willing hearts and souls to follow Christ. The Bible has been written for us to learn, to obey and to live by the Word of God. " But you have carefully followed my doctrine, manner of life, purpose, faith, longsuffering, love, perseverance, persecutions, afflictions, which happened to me at Antioch, at Iconium, at Lystra--what persecutions I endured. And out of them all the Lord delivered me. Yes, and all who desire to live godly in Christ Jesus will suffer persecution. But evil men and impostors will grow worse and worse, deceiving and being deceived. But as for you, continue in the things which you have learned and been assured of, knowing from whom you have learned them, and that from childhood you have known the Holy Scriptures, which are able to make you wise for salvation through faith which is in Christ Jesus. All Scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness, that the man of God may be complete, thoroughly equipped for every good work. " 2 Timothy 3: 10-17. AMEN!! 31 May 2001 (Day T+279) Six new Tommy photos to see in the "photo album" section. They are at the end of the section. 28 May 2001 (Day T+276) We are saddened by the news that our long-time transplant friend, Chris S., passed from this life, to the hope that is Christ, this past Saturday evening. Chris, who was 11 years old, had been through one of the longest, hardest roads ever travelled by a transplant child and still embodied it with grace. He had so many complications during and after transplant; we were always incredibly amazed at how tough he was and how he kept that desire going to be a healthy child again. He loved Pokemon and he even got Tommy interested in watching the new Pokemon movie. He was very well versed in everything Pokemon. He loved most of all when his father bought him a puppy. Such a happy companion! A warm, friendly body that loved unconditionally. His father said Chris knew he needed to be in the PICU this last hospitalization and knew he wasn't going to make it. Saturday before we left the hospital from our outpatient visit, we were fortunate to visit with Ed & Marge, Chris' parents. Ed recently married Marge and they both are such saints to have given themselves so selflessly to caring for Chris. Ed lost most of his possessions in California after losing his job and having a prolonged stay at Duke for over 2 years. These "things" meant nothing to him. Chris meant everything to him and he was willing to sacrifice it all for his son. Does the story sound familiar?? God sacrificed His Son, Jesus, for us willingly, for the promise of redemption from our sins. The promise of Life everlasting if we are obedient to His Word. Thank you God for Chris' life here on earth, that like your Son's life, was an example of your gracious love. We have been truly blessed to see Christ's love in action through Chris' life. No child should have to harbor such pain and agony and disease. More often than not, we have been here at this computer writing about our transplant friends, one by one, who have lived too short a life. It burdens the heart and the soul. We rejoice with those who have made it, but they are too few. Have mercy on our children, O Lord, our God! Hear our prayers for their health and be gracious in your care for them. " Hear my cry, O God; attend to my prayer. From the end of the earth I will cry to You, when my heart is overwhelmed; Lead me to the rock that is higher than I. For You have been a shelter for me, and a strong tower from the enemy. I will abide in Your tabernacle forever; I will trust in the shelter of Your wings. " Psalm 61: 1-4. Amen! " I cried out to God with my voice--to God with my voice; and He gave ear to me. In the day of my trouble I sought the Lord; My hand was stretched out in the night without ceasing; My soul refused to be comforted, I remembered God and was troubled; I complained, and my spirit was overwhelmed. " Psalm 77: 1-3. Amen! 26 May 2001 (Day T+274) Happy Memorial Day weekend! Hope y'all are enjoying the time off (if you're off and not working like I am)! We got back home this afternoon after Tommy's surgery on Friday. We drove down Thursday and had trouble that night. First off, Tommy started fussing about his right hip in the car. He was very miserable. We eventually got to Durham, but it was no picnic. (He wanted to lay down during the ride!). When we checked into our hotel room we let him lay down and try to sleep. He was still miserable so we decided to discuss this with Dr. Kurtzberg, who told us to increase his methadone (pain medicine) which we had been weaning him off of. He did settle down a bit, but when I checked on him shortly thereafter, he was cold, kind of clammy, pale and had goose bumps all over. Well, needless to say, we were on our way to the bone marrow unit at the hospital to get him checked over. We were thinking that this was not a good thing to be happening the night before scheduled surgery. When we got there, Tommy's temp was 102`F. His pulse was 176 and his respirations were in the 40s. His blood pressure was ok. They gave him a dose of IV antibiotic after drawing some lab work and blood culture. No urine culture to be had, as Tommy is not the cooperative sort with something like that. Friday morning he was examined in pre-op holding by both Bone Marrow and GI. Tommy still had a fever of 100.5`F and they had to call Dr. Kurtzberg to discuss whether or not to go ahead with the surgery. We were both surprised when we were told she OK'd going ahead with the procedure! They did give Tommy some extra IV antibiotic coverage during the procedure. A rather pleasant surprise was when Dr. Treem (GI doctor), who did the esophageal dilatation, said he was able to use up to a 15mm balloon and pass an endoscope through the opening to look into the stomach also. This was good news because in past dilations, sometimes he could not even get the tinniest endoscope through the esophageal stricture. Thank you, God for that good news! After sitting with Tommy in the recovery room, we thought we'd be getting discharged to head on up to the bone marrow clinic for another exam prior to driving back to Virginia. It was all a very confusing afternoon. We ended up however on the bone marrow unit in the hospital for a "few hours of observation" and a possible over night stay, depending on Tommy's progress. Well, no one seemed to be expecting our arrival at the bone marrow unit and it was not clear who decided we should be up there (anesthesia, bone marrow or GI). To make a long story short, we were out of the hospital by 6pm, but they wanted us to stay overnight in Durham and check Tommy in the morning before we returned to Virginia. Unfortunately for us, the hotels we usually stay at were booked. We decided to try out a different one and that is a story in itself, but just let me say that I won't stay in a hotel room that has moldy bathtubs or moldy tile. YUK! Won't be staying at a place like that ever again even though they finally ended up giving us an acceptable room, it was just not a great experience. Tommy seemed to be hot again late last night (no thermometer with us! Will never leave home again without one!) but afebrile this morning. We had to go back to the bone marrow unit for another check-up and another dose of IV antibiotic before being sent home. Tommy had no fever when we were there. This afternoon he has a low grade temp of approximately 99-100`F. His lung congestion has decreased from yesterday, but is still there and our stubborn child is very tired of coughing any of it out! He is still complaining of his right hip hurting, but perhaps a bit less than two days ago. Don't know what that is all about or where the temp is really coming from. Earlier this week his back was hurting, now it's his right hip!!! He has been wanting Tom or me to carry him all over the place! Well, Tommy weighs almost 60 pounds, so he is a "little" heiffer(i.e. cow)! This will no doubt be a Motrin kind of weekend! Late tonight our little buckaroo is having some very frequent diarrhea stools. It just adds to the question of what is going on with him???!!! We're hoping tomorrow will bring a better and healthier day! Some news from the transplant unit is that Dr. Howrey will no longer be an attending physician there. He is moving to Fort Worth, Texas mid-June to take on a new job there. Also Gary Turner, another physician, is leaving at the end of June to do research in Miami. We saw Chris' parents as well. Chris was in the hospital for a number of things, but is now in the PICU and not doing well. The dialysis catheters in his chest were very infected and removed; he has a bacterial bloodstream infection that has made his blood pressure very low and his heart rate low as well. He is on the ventilator and the PICU doctors did ask his parents about doing CPR and other resuscitative measures if need be. I think Ed and Marge were agreeable to keep Chris going, but it sounds like our little friend's body is wearing out more and more. It is so sad. Chris is now in the same double room as Hilary. Tom talked to Hilary's uncle and he thought she was improved slightly, but is still extremely sick and in need of our prayers. Please pray for Tommy and our two very sick friends and all those who have to travel this long, long road for the hope of a healthy child. God bless you. " Do not think that I came to bring peace on earth. I did not come to bring peace but a sword. For I have come to 'set a man against his father, a daughter against her mother, and a daughter-in-law against her mother-in-law.' And 'a man's foes wil be those of his own household.' He who loves father or mother more than Me is not worthy of Me. And he who loves son or daughter more than Me is not worthy of Me. And he who does not take his cross and follow after Me is not worthy of Me. He who finds his life will lose it, and he who loses his life for My sake will find it. " Matthew 10: 34-39. AMEN! 22 May 2001 (Day T+270) <<YAWN>>The sun was out in Durham!!! YIPPEE!!! At least for part of the day! It was great to see! We had a "9:30am" appointment for Tommy's barium swallow. Got up at 5am to get ready and roll out the door in time to be there. After arriving on time we ended up having to wait until about 11am before they started the Barium swallow! We got to the bone marrow clinic and were ushered rather quickly into the Rainbow Day Hospital for Tommy's usual IVIG medication. Had lots of blood drawn for 9 month immune function studies. Found out we had to go to echocardiogram around 1pm. Had to go over to the hospital to do this (why they sent us out of the children's clinic..."complete services for your child"...over to the 7th floor of the hospital (which is quite a jog) we don't understand. After we got over there we had to wait about an hour before they had the echo tech come over from the children's clinic to do Tommy's echo.(duh!) We were about ready to leave without getting the echocardiogram done because we had a could-not-miss appointment with the GI doctor regarding Tommy's esophagus and swallow studies. Luckily, the echo tech came just before we were aiming to leave. Got done with that, went back over to the clinic (thank God for wagons!) and went to wait to see Dr. Treem (the GI guy). Waited about an hour and a half on this one after being told a few times, "It'll be just a few minutes!". Yeah, sure. Tell us a new story. All of this and knowing we still had to make it back to the bone marrow clinic to finish up with Dr. Kurtzberg. We really could have been out of there by 4 or 5pm, but this is the price one has to pay for inefficiency. SIGH...Tommy passed out as soon as Tom buckled him in his seatbelt. No surprise there! We did make it home with our eyes still open, though. It must've been your prayers! (And the Cheese Nips)! Just feed Tom cheese nips and he's good for a lot of driving mileage! (yes, they are finger lickin' good!). Well, we're exhausted. Tommy WILL be scheduled for an esophageal dilation Friday around 8am (you know how that goes!). We did get to see Amir, who looked like a normal little boy!! He looks so much improved from when we had seen him in the clinic last. He had been having problems with seizures after his viral meningitis previously, but he really looked great! We were able to visit some with Austin's folks. They were waiting to see if Dr. Kurtzberg would allow them to wander back HOME home. Austin was being a bit radical after being medicated with benadryl. Unfortunately we did not get to visit with anyone else. By the time we got back to the bone marrow clinic, it was cleared out with almost everyone. And in our "timely" travels we didn't have any time to wander over to the BMT unit or the PICU to visit families there. Please keep Hilary in your prayers. She is still in the PICU, I think on a ventilator and Austin's Mama said something about they think she has something viral going on. Sorry it's not more informative, but we got distracted with our discussion about Hilary when Tommy started coughing up large wads of mucus ;^). Never a dull moment with our boy! Tommy's blood counts were great again. His hemoglobin was 14, his hematocrit was 42%, his white blood cell count was 11, his platelet count was 387,000!!! All "normal"!!! Of course, not everything could be perfect. Tommy's magnesium level dropped again to 1.2 (normal is 1.7-2.3). We are a long way from "normal" here the way his magnesium keeps dipping. Everytime we draw labs we are hoping for good Magnesium levels, without much luck so far. So we have to keep Tommy's "infus-a-port" accessed with a needle and give him daily IV magnesium. Since the current dose is not doing the job, we now have to double it. Otherwise, his blood counts could not get much better! Praise GOD!!! On top of that, Tommy's great friend, "Mr. Mike" stopped by to visit while we were in clinic!! He is on his way back to Canada (eh?!) after graduating with law degrees and being the everlasting student. Guess the good times are over, Mike!! Time to pay for that education now!! hahaha... Well, that about sums things up until Friday. Pray for success of the dilatation without complications so we can be on our way home Friday night and not be staying over night in the hospital. Many thanks! God bless you abundantly! " But take heed to yourselves, lest your hearts be weighed down with carousing, drunkenness, and cares of this life, and that Day come on you unexpectedly. For it will come as a snare on all those who dwell on the face of the whole earth. Watch therefore, and pray always that you may be counted worthy to escape all these things that will come to pass, and to stand before the Son of Man." Luke 21: 34-36. Amen! " All Scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness, that the man of God may be complete, thoroughly equipped for every good work." 2 Timothy 3: 16-17. AMEN! 20 May 2001 (Day T+268) The sun came out briefly yesterday afternoon and is behind the clouds again! May be so for another week! ARRGGGHH!!!! I can't stand it! I intensely dislike these damp days, somewhere between humid and cold! Yuk! Anyway, minus the complaining, we have found out that Tommy will be having (maybe, hopefully) a barium swallow study done early Tuesday morning at Duke, before our bone marrow clinic. Then in the afternoon we are supposed to see the GI doctor for a consult. He has tenatively set up a date for an esophageal dilitation for Friday, May 25th at 8am if the barium swallow shows the necessity for it. Pray that Tommy will not freak out with this barium swallow study. He did pretty well last time, even though the tech came at him with a huge adult syringe loaded with 60ml of contrast liquid! HA HA!!! Tommy takes sips and that's it! Mommy and Daddy to the rescue! So, that's the plan. Tommy continues to try our last ounce of patience on the potty training business. He is especially deft at working circles around Nana and sometimes even Mommy and Daddy. I am sure there are worse things in life, but right now, this has got to top the list. Where did he get all this stubbornness from????????????WHERE??? Please pray for safe travel for us this week as it will be a busy one and pray for our sanity as well! Thanks. " The law of the Lord is perfect, converting the soul; the testimony of the Lord is sure, making wise the simple; The statutes of the Lord are right, rejoicing the heart; the commandment of the Lord is pure, enlightening the eyes; The fear of the Lord is clean, enduring forever; the judgments of the Lord are true and righteous altogether. More to be desired are they than gold, Yea, than much fine gold; Sweeter also than honey and the honeycomb. Moreover by them Your servant is warned, and in keeping them there is great reward...Let the words of my mouth and the mediation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer." Psalm 19: 7-11, 14. AMEN! 18 May 2001 (Day T+266) Will the sun ever shine again????!!!! Well, we are having quite a time with Tommy and his upper airway congestion. Even though his CT scan showed no enlarged nodes or infectious process, he continues to cough up large amounts of thick mucous all day and all night. It does not matter what we give him to "help" this congestion go away, nothing seems to work. Needless to say, this does not bode well for sleep, for any of us. He is worn out from the coughing and the potty training and so are we. Tempers are getting shorter around here, especially with the lack of sleep, the constant, non-stop care and trying to fit in jobs on top of that. We may be looking at another esophogeal dilitation and/or trip to the Ear/Nose/Throat doctor sometime soon. It would be grand to have some kind of break, but then we wouldn't be able to be gone long enough to relax anyway. Tommy has so many drugs and feedings, among other things to fuss with,that just getting a "regular" baby-sitter is an impossibility. And then there's Nana (who used to watch Tommy more often) who has her hands full with going to see Grandpa at the nursing home. So, there's me and Tom or Tom and me. Whichever way you look at it, it's not enough to go around. I don't understand how a single parent could do this parenting stuff by themselves, especially with a chronically ill child. Life is just very frustrating right now; it always is when Tommy doesn't feel well. Physicians need to listen to the parents and a lot of times they don't, they just think you're crazy. But more often than not, the parents end up being right all along, because they know their child best. So, there you have it! I have done my whining, but it felt good to get it off my chest. Please keep Chris S. in your prayers. He is back in the hospital not feeling well and is supposed to have his dialysis catheter removed and a different one put in. He is also supposed to have a stomach feeding tube put in as well so they can take him off his IV TPN(nutrition). Apparently his heart function is not as well as it should be either. Summer M. has passed away after relapsing with her leukemia shortlly after being transplanted. Hilary is still needing much prayer and is still in the PICU with many problems. Pray that Austin continues to do well and gets to go HOME home soon! Please keep all the transplant children (and their parents) in your prayers, especially those who have gone to be with the Lord. Thanks. " Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is anything praiseworthy--meditate on these things. The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you. " Philippians 4: 8,9. Amen! " God be merciful to us and bless us, and cause His face to shine upon us, That Your way may be known on earth, Your salvation among all nations. Let the peoples praise You, O God; Let all the peoples praise You. " Psalm 67: 1-3. Amen!
9 May 2001 (Day T+257) Today is a cloudy, sleepy kind of day...just the kind I'd like to be snuggled in bed on! But that in itself is a dream!!! Guess I'm obsessed with sleep! Maybe I'm really "sleep-walking"!!! Yeah! That's it!!! I'm sleep-walking and this is ALL a dream!!! hahahaha. I'm only kidding myself, right??!! We had a good visit at clinic yesterday. Tommy's counts are almost all normal, including his liver enzymes. Some of those are elevated from some of the drugs he is taking. Tommy was a very brave boy being very still for his CT scan, without needing any medication to keep him calm. He was pretty scared going into it but he calmed down and held my hand very tightly, along with Pooh's, while he had the scan. We should hear something in the next day or two. Hopefully it will tell us that his sinuses are okay and the soft tissues there in his head and neck are normal and not getting enlarged, like with this Epstein-Barr virus lymphoma we had to deal with this past December. In two weeks we will be having immune function blood studies done. Tommy will not have anywhere near normal function since he is still on a lot of immunosuppression. Dr. Kurtzberg said if he has around 20% immune function returning that would be a good sign. I guess they don't expect much but are hoping to see some immune function returning. After Tommy's IVIG infusion and his CT scan he had his monthly dose of IV Pentamidine. About 10 minutes after the infusion started, I noticed Tommy starting to act a bit odd. He had been watching Blue's Clues, and was having a grand time singing and clapping to the music, but he was suddenly quiet and he couldn't breathe through his nose and it looked like he was having a hard time swallowing. Then he started to vomit. Well, this is just too familiar a scenario, like last month when we thought he was reacting to the different IVIG. Tom ran out and got the nursing staff, who called Sue, the nurse practitioner, to come right away. They immediately stopped the IV medication, pulled it out of his infus-a-port line, and gave him some IV Benadryl. His blood pressure had been a bit higher than his normal and his heart rate was about 170! After the benadryl, the symptoms were relieved within minutes and his heart rate came down to the 130s. Luckily he never started wheezing or becoming any more distressed but it is scary to see especially when it's your own child! So, no more IV pentamidine for prophylaxis against pneumocystis pneumonia. Since Tommy was started on some oral Bactrim for his sinus congestion they said this can also cover him for the pneumocystis. As long as he is tolerating the Bactrim, we will stick with it. Tommy continues to do pretty well on the toilet-training. I think he is getting more used to it. Not that he doesn't whine and cry sometimes still, but he is less resistant to doing it. We will have to try to get him to start using the toilet in other places, like at clinic, for example. He's a bit gun-shy about it and it's usually such a busy day at clinic that "toilet-training" there is a ridiculous idea. We will have to overcome this at some point. It will give him more confidence as well. We were fortunate to see Jenna and her mom Kay, Michelle and her mom Cecilia, Chris and his mom Marge, Austin and his Dad Tim and Julia and her mom. We visited briefly with Hilary's mom Arlene in the PICU. They very much need your prayers. Looks like Hilary now has pneumonia and they had to sedate her more and increase her ventilator settings. So neurologically, at this point, it is impossible to tell if she is having any normal function returning. The doctors still do not have answers as to why her neurological functioning has become so impaired. Please pray fervently for them. The strain, the burden, is great. Pray also for Chris, who is depresesd about having to remain on dialysis. This takes up most of his life now and for a kid, it's definitely not "normal". He has been asking his mom about dying. Austin looked like he has grown about a foot from when we saw him last month, but he also looked as if he didn't feel good yesterday. His dad said he had broken out with a rash on his knees and elbows and they weren't sure what it was from. Jenna is to have her central IV lines taken out today; she looked great (even on crutches!) and so did Michelle!! We are also fortunate that Tommy is doing as well as he is. Please pray for continued good health for our children. Healthy children truly are a blessing that many of us take very much for granted. Thank God for your health today! " Thus says the Lord: 'Let not the wise man glory in his wisdom, Let not the mighty man glory in his might, Nor let the rich man glory in his riches; But let him who glories glory in this, That he understands and knows Me, That I am the Lord, exercising lovingkindness, judgment, and righteousness in the earth. For in these I delight,' says the Lord. " Jeremiah 9: 23-24. Amen! " For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you. " Jeremiah 29:11-12. Amen! 5 May 2001 (Day T+253) Today we went to Duke for their first annual "Rainbow of Heroes" Walk and the 10-year celebration reunion of their Pediatric Bone Marrow & Stem Cell Transplant program. Families who have experienced Duke and their transplant program were invited. In the morning, they held a 5200 foot walk for the participants. It was a walk to raise funds for the family support program to support the families on the bone marrow unit. We did not attend this as it would have been difficult to get Tommy out the door with all the meds, his tube feeding and potty-goings-on. We arrived in time, however, for the luncheon. It was quite nice and we were able to catch up with a few friends we haven't seen in a while. A picture of Tommy was even in one of the video documentaries they presented. He was smiling quite hugely sitting on a hospital school teacher's lap, wearing one of his famous Scooby Doo t-shirts. Tom was also caught in a couple of other clips. Our friend Michelle was interviewed during one such documentary and eloquently described her brush with death and dying and her now on-going recovery from leukemia. It was a touching film. Tommy was so excited every time we clapped for someone or something. He was all smiles. Lots of pictures were taken of the children and they had a "parade of heroes" near the end where all the transplant children marched up on stage, one-by-one, to receive their "medals" of honor. It was great!! They took group pictures of the children: those who received allogenic transplants, those who received cord blood transplants, and those who received autologous transplants (time to get out your dictionary!). Tommy got to hold the sign up for the "Allo" group. He was the only one wearing a mask. Most all the other children are way farther out from transplant than he is and have real functioning immune systems! We have lots of pictures to show you from this reunion and will get them on here as soon as Tom can sit down to do it! So stayed tuned!! Of course, our overall interest in going was really to see Cameron Indoor Stadium where the Duke Blue Devils basketball team played and won their national championship this year. If ever there was a stadium that could be hidden, this place is it. The outside facade is in the stone gothic tradition of all the buildings there at Duke University. You would never figure a basketball arena was hidden inside. It was incredible once we found it! The seating sections and surroundings were not made of metal and plastic but of heavy old oak wood panels and doors. It was incredible!! (am I repeating myself??!!!). The seating during a game would have made it a very intimate (and noisy) place as it looked like there wouldn't be much sideline room at all. Like I said, it was an incredible place to be in for an incredible event! We had a good laugh when Dr. Paul Martin and Dr. Joanne Kurtzberg actually got caught up in their pony-tails (briefly) during a hug! hahahahaa.....that was funny! We are all tuckered out! All the travelling and packing gear, meds, feeding supplies, potty supplies, extra clothes, blah, blah, blah...wears us out! Now we get to do it again Tuesday. I know we won't be home early that night! Thanks for visiting our webpage. Please keep Hilary in your prayers. She seems to be improving but is not "out of the woods" yet! Keep those prayers flowing to the Lord! We are thankful to you for them and I know her family is too! Also continue to remember all our transplant friends in your prayers. Those who have survived and those who have not. They are the true heroes. God bless you!!! " Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him. " 1 John 5: 14-15. AMEN! " Therefore, since we are receiving a kingdom which cannot be shaken, let us have grace, by which we may serve God acceptably with reverence and godly fear. For our God is a consuming fire. " Hebrews 12: 28-29. AMEN! 2 May 2001 (Day T+250) Dear all! I am writing specifically to ask for your prayers for a 13-year old girl named Hilary, whom I have mentioned previously in this journal (www.caringbridge.com/page/hilarycarpenter). She is 80+ days post-transplant, having a slow struggle to grow donor cells. Her last white blood count was 0.9. It has taken her 80+ days just to get that kind of a white count. It has been a slow road for her. In the past week she has taken a turn for the worse, neurologically. Just a few days earlier she was eating and singing and walking. She has slipped into a coma and today had to be taken to the PICU (Pediatric Intensive Care Unit) to be sustained on a ventilator and what not. Now, having been through the PICU experience ourselves, on top of the transplant scenario, the stress and agony of seeing your child lay helplessly in one of those rooms is too much to bear. It is something I could not describe adequately for any of you. Those who have been down a similar road are the only ones who really know what it's like. Since I cannot convey to you what it is truly like, all I can do is ask for your prayers for this special girl and her family. Please send a caring note via their guestbook on their web page. It truly does lift one's spirit among the exhausting reality of the day. As for our buckaroo, Tommy, he is still in the toilet-training mode and will be for a long time! He likes to play a lot of tricks on Nana, (not to mention us, although we are wiser to them now), just to get back into a diaper. He is something else! I spend most of my day obsessed with getting him to use the toilet. I never thought we'd be able to reach this point, but I am glad it is achievable. It will just take us longer to wear HIM down to accept the reality of NO MORE DIAPERS!!! I WILL win! As Tommy would say, "WHEW"!!! We have been talking with Sue, his nurse practitioner, about his sinus difficulties and we may be doing some more studies when we get to clinic next tuesday. Sounds like it may be a REALLY long day then! Oh well, it's the story of our lives! In the mean time, please continue to pray for Hilary, Stephen, Amir, Austin, Michelle, Jenna, Chris S., Jasmine, Maddy, Alisha (still in the PICU as well), Heaven, Jon...all those who need your prayers so very much. Also remember those parents and families who have lost their young heroes during or after transplant. " What then shall we say to these things? If God is for us, who can be against us? ...Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?...Yet in all these things we are more than conquerors through Him who loved us. " Romans 8: 31, 35, 37. AMEN! " Now when He got into a boat, His disciples followed Him. And suddenly a great tempest arose on the sea, so that the boat was covered with the waves. But He was asleep. Then His disciples came to Him and awoke Him, saying, 'Lord, save us! We are perishing!' But He said to them, 'Why are you fearful, O you of little faith?' Then He arose and rebuked the winds and the sea. And there was a great calm. " Matthew 8: 23-26. AMEN! 26 Apr 2001 (Day T+244) Hello everyone! Another round trip to Duke and back home completed Tuesday. We actually were finished early and got home before 10:30pm!! Of course, the reason being, Dr. Kurtzberg was not there! We did not know she wouldn't be there, but Sue was there, and she's always a "comfort" to have around since she knows Tommy so well. Tommy's counts are GREAT!!! His hemoglobin is normal at 13.3g/dl, his hematocrit is normal for the first time this year at 40%, his platelets have skyrocketed above the "normal" range to 446,000!! His white blood cell count is normal at 9,500. His magnesium, however, still is below normal at 1.3 mg/dl (normal is 1.7-2.3). This is with daily IV magnesium infusions except on Mondays when we de-access his port to give his skin a break. We are waiting to hear from Sue after she talks with Dr. Kurtzberg about this. They may have to increase his dose. Tommy is being weaned off of his oral steroids every two weeks. He is only getting 3mg a day now. His weight has been increasing slowly as well over the past month or two (not that he needs any more weight gain). Tommy received his IVIG from a different source (the one that's been used previously but now is in short supply) and had no problems with it. We saw Austin and his mom at clinic. They were a bit down, Austin didn't feel good, and his mom was worried about his white count and platelets taking a downward turn gradually over the past week or two. Please pray for them, that this will turn around for them and his counts will improve. They are past the 100 day mark post-transplant, but are still having to stay in Durham because of these and other issues. Also, especially remember Stephen in your prayers. Stephen is more than a year past transplant but we have just learned that he has been readmitted to a NJ hospital for pneumonia. Remember also our friend Jenna in your prayers for her out-of-control estrogen levels and for her spirits to be lifted up to keep on fighting the bone disease that looms large for her and her family. Pray for the doctors treating her that they will have the wisdom from God to find the right treatment for her so she can have a more "normal" childhood, because nothing after chemotherapy and/or transplant is hardly ever normal. At home here, Tommy is doing pretty well with the toilet-training business. He does make occasional accidents but overall he is doing well. Much better than I thought he would. He is very clever, using tricks and manipulation to keep us off balance. He wanted to "go to sleep" yesterday quite early and I thought he was getting sick or something. We later realized that it was just to get a diaper put on since we still put one on him for nighttime. Maybe that's not a good idea, but until we can get his feeding schedule turned around to where we are not feeding him at 11pm, I don't think it's a good idea to go "cold turkey" without something on his bottom. I guess it will eventually all work out but Tommy is such a strong-willed child. He has done pretty well but we are by no means at the point where we could trust him somewhere other than home (not that we go anywhere, mind you!). So that's life for now. We have been busy with other chores around the house. Take care and thanks for looking in on us. Continue to keep us in your prayers along with our other transplant friends. " 'For this child I prayed, and the Lord has granted me my petition which I asked of Him. Therefore I also have lent him to the Lord; as long as he lives he shall be lent to the Lord.' " 1 Samuel 1: 27-28. AMEN! 17 Apr 2001 (Day T+235) A real novelty today: a Tuesday spent AT HOME instead of driving to Duke! YIPPEE!!! This week is spring break for the school system here, so we are having a nice, quiet, boring week at home. Well, I guess it is not all that boring. We are trying to get Tommy to use the dreaded "potty". He has done really well these past two days. We thought we'd never get him to go in the toilet again, but luckily he has with much encouragement and some bribery. I was feeling quite discouraged last week because I was not motivated either, just too tired and too tired of the fussing, the crying and the whining. But this week has been different and it helps that we have some time off all by ourselves without having to go to doctors or having teachers/therapists over. Don't get me wrong, we like Tommy's teachers/therapists, but it impedes something like potty training because he's distracted doing those other things. So I took the opportunity this week and thankfully it is paying off. We still have to use diapers for nap time or bedtime, but it is a far cry from using them all day long. I am glad that Tommy decided he was ready to try this too. Miss Sue and Dr. K. will be proud of him when they see him next week. We had to re-access Tommy's port-a-cath tonight to restart his IV magnesium on a daily basis. It went real well. Tommy usually kicks and screams at clinic, but here at home he was calmer and it went smoothly. Tommy is enjoying his Hot Wheels "fire station" now after a successful day on the potty! We are all winding down for the night. It has been a long, busy day and evening. We hope you all had a great weekend and continue to have a great week. Please remember our transplant friends, Jenna, Chris, Michelle, Jasmine, Austin, Julia, Alisha, Hilary, Heaven, P.G., Maddy...(the list is too long)...in your prayers each day. God bless you as He has blessed us! " And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong. " 2 Corinthians 12: 7-10. Amen! 11 Apr 2001 (Day T+229) Hi all! Well, Tuesday's trip to Duke was even longer than last Tuesday, if you can believe that! We spent 8 hours waiting just to talk with Dr. Kurtzberg. Tommy did receive his usual IVIG and monthly IV pentamidine. Things weren't quite "usual", however, after receiving those drugs. Since there is a shortage of a certain type of IVIG that the children usually do well with (i.e. minimal side effects), Duke is using a different preparation of IVIG and they usually "pre-medicate" the kids with IV Benadryl and Tylenol. The past 3 times Tommy received this drug, even without pre-medication, he did well. However, it took 3-4 hours to infuse the solution. (Other IVIG took 2 hours maximum). Yesterday, Sue wrote for a faster infusion rate, thinking he was getting pre-medicated. Well, he didn't get pre-medicated because speech therapy visits Tommy and we don't like him asleep during this valuable time. About an hour after the transfusion was finished, Tommy started to vomit, then couldn't swallow his oral secretions and could not breathe at all through his nose. He was acting and looking rather strange. Finally realizing it could be a drug reaction (duh!), I went to find someone (only one nurse in the clinic after 5pm and she was no where in site!). Dr. Kurtzberg came around quickly and, even though Tommy was not wheezing or turning colors, his upper airway was being compromised by a reaction from either the IVIG or pentamadine that he had received. It is difficult to determine which, but since Tommy has never had a problem with the pentamadine over the past year and a half that he's been getting it, they feel the culprit was the different IVIG. A dose of IV Benadryl had amazing and quick effects! Thank goodness! Within minutes the nasal passages were open, he was able to swallow, and he was calmer. "WHEW" as Tommy would say with a swept hand over his brow! On the lighter side of the day, we were fortunate to see Jenna and her mom, Kay, long time transplant friends of ours. Jenna looks great! She's getting around on crutches, seems like with ease. They didn't think it would take too long to get blood drawn in endocrinology, but they were fooled too by having to hang around for several hours just for that. That's "life at clinic", folks, and it takes a long time to get over the inefficiency of it all and just "grin and bear it". Austin and Chris did not like having to wait so long either! It is soooooo boring that it just wears you out! Please pray for Alisha. We heard from Austin's mom that she had been taken to the PICU. Heaven, however, has been moved to a stepdown unit, out of PICU, and is still battling a very nasty fungal lung infection. Hilary has had her THIRD bone marrow aspirate, probably in as many weeks and is still waiting results. Her white counts at 60 days post-transplant are still around 0.3. She has also suffered some permanent hearing loss. Please keep these children and all of those who we don't even know, but are up there on that transplant unit, in your prayers tonight and every night. It is a comfort to their souls. " Lift up your voice with strength, lift it up, be not afraid; Say to the cities of Judah, 'Behold your God!' Behold the Lord God shall come with a strong hand, And His arm shall rule for Him; Behold, His reward is with Him, And His work before Him. He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom, And gently lead those who are with young. " Isaiah 40: 9b-11. AMEN! 4 Apr 2001 (Day T+222) DUKE BLUE DEVILS---2001 NATIONAL NCAA BASKETBALL CHAMPIONS!!!! What a game! We had fun watching it but did not like the biased announcers that were oh-so-pro-Arizona! Nothing objective about them there. Guess since we've "lived" at Duke long enough these past two years we felt like part of the "family", so we cheered them on in the tournament. We thought the Maryland-Duke game was quite stressful, more so than the Arizona game. Fortunately, the strong survive! Tom went to pick up Duke Championship T-shirts while we were at clinic Tuesday. A real wild time! I am so glad he went instead of me. Duke is a real class act in a lot of ways and we are not surprised that it is that way with their basketball team as well. Yesterday was a very long day at clinic. Didn't leave clinic for home until about 7:30pm and didn't arrive until about 10:30pm, later than usual. Some doctor flew in from another state to consult with Dr. Kurtzberg on children with a specific disease needing transplant so there were a lot more children there than usual. But we knew we were gonna be there a long time, so we didn't have high expectations going into the day of getting home early. Tommy's blood counts are good! His hemoglobin was 12.3, his platelets were 280,000 and his white blood count was 9.2! His magnesium still hovers below normal. Some of the drugs Tommy takes make his kidneys leak magnesium, so it is a constant battle to keep his magnesium level where it is. Most of his other chemistries are normal. Tommy received another dose of IVIG (human immunoglobins) while he was at clinic. Dr. Kurtzberg surprised us by saying she thought we could start coming every OTHER week instead of weekly if he continues to do so well!! Yippee!!! What a break that would be! I'm not sure if I'd know what to do without packing up and going somewhere on Tuesdays. But I could really get used to it! Tommy continues to have homebound schooling and I am hoping to get it continued through the summer. He has missed so much. He was starting to really make strides 2 years ago, prior to transplant, but 2 years have been lost and it is not the same. Tommy's immune function will still be compromised for possibly another 6 months to a year. This "hibernation" is long, lonely, and unnerving, but the strong survive. With your prayers we will survive! Many thanks for your prayerfulness for Tommy and our transplant friends along the way. They sustain us with encouragement like water sustains our thirst and like Jesus sustains our hope. God's blessings be yours today! " A woman of Samaria came to draw water. Jesus said to her, 'Give Me a drink.'....Then the woman of Samaria said to Him, 'How is it that You, being a Jew, ask a drink from me, a Samaritan woman?' ....Jesus answered and said to her, 'If you knew the gift of God, and who it is who says to you,"Give Me a drink," you would have asked Him, and He would have given you living water.' ...."Whoever drinks of this water will thirst again, but whoever drinks of the water that I shall give him will never thirst. But the water that I shall give him will become in him a fountain of water springing up into everlasting life." ' John 4: 7, 9, 10, 13, 14. AMEN! 1 Apr 2001 (Day T+219) Hello everyone! It still is great to be home! Tommy is feeling better after developing a sinus cold this past week. He was rather lethargic, complaining of a sore throat and quite congested with a low grade fever. Luckily it seems to have gone away except for some of the nasal congestion. Tommy has been having homebound schooling about 3-4 hours a week and getting better at the alphabet everyday. He surprised us by reciting a good number of them from memory. He is into "reading" books and has a few of those memorized too. Thank you to P.G.'s parents for the great Scooby Doo readers! He loves them! You know the old adage about when you just get your car paid off, it will fall apart or when one thing breaks down and needs repair, more are sure to follow. So true with our 3 weeks since being home! We haven't really been able to keep up with things like cars and the house these past 2 years we've been dealing with Tommy's transplant needs. So, these "things" around here decided to "speak" to us. First our 12 year old car needed major repairs. Lots of money down the black hole there. Guess it's still cheaper than a new one, and I'm sure, Howard would agree on that one! hahaha... Next the dishwasher and garbage disposal decided to quit working as well. Fortunately for me, my wonderful, handy-dandy husband, is "mechanically inclined" and has revived both of these household appliances!!! Yippee! Now, our porch stair rail has been chewed up by some nasty termites because the silly builder stuck the wood posts into the ground, not into cement. Live and learn. We were "young" and foolish when we built this house! No word on the dollar amount there yet. We are hoping someone at church can do the work for a decent price. Actually this was the minor problem of the whole month. Now for the really bad news: our "furnace" kicked the bucket this week. Actually, what's broke is a huge fancy hot water tank attached to a "heating/cooling exchanger" and it costs BIG money to replace. We had it priced along with a conventional gas-forced air furnace replacement. Even BIGGER money there, so I guess you can say we're getting away "cheap" with the hot water tank replacement. Hahahaha! (sick humor). As Tom and I say when we are floating in the red pool of debt, "It's only money!!" (more sick humor). Can't say we've lost our sick sense of humor. Gets worse by the day! Well, now that we've let you in on our woes of the month, we are still happy to be home!!!!!!!!!!!!!!!!!!!!!!!!!! Thank the Lord for being home. I love my dishwasher, I love my washer AND my dryer, I love my big refrigerator, I love my garage, I love my OWN BED, I love my own bathroom, I love my dustmop and even my Lysol toilet bowl cleaner!!!!! YES! WE LOVE BEING HOME!!!!! Thanks to all of you who have kept Tommy in your prayers and our transplant friends, as well. Please continue to pray for them. Our struggle is not over. Thank you God for Jasmine and Jenna and Maddy and P.G. and Chris and Michelle and Thomas and Jordan and Amir and Austin and Jacob and Kyle and Hilary and Yousef and Katie and Kevin and Willie and Levent and Alex M. and Alex W. and Alex S. and Justin T. and Justin L. and Michael R. and Michael B. and Stephen and Natasha and Brooke and Melanie and Shaima and Sadie and Emilee and Holly and Becky and Conner and Keri and Timothy and Britton and Tescherra and Tre-Quan and Jon and Andrew and Hunter and Marcus and Jason and Tori and Max and Logan and Alisha and Colt and Shannon and Julia and all of God's children and their parents! What a privilege God has given us to be able to meet such special parents and families. This list is too short because my memory is also. Please say special prayers for Heaven who is in PICU with an aggressive fungal infection. She is a special child of God. Her website is: www.caringbridge.com/wv/heavenmcintire. Send her and her parents some of your love. Thanks for listening and for praying! " I thank my God upon every remembrance of you, always in every prayer of mine making request for you all with joy, for your fellowship in the gospel from the first day until now, being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ. " Philippians 1:3-6. Amen! 27 Mar 2001 (Day T+214) Another good day at clinic! Two weeks running! Tommy's blood counts are coming back up to where they were before his viral illness that kept him in the hospital for almost 2 months. His magnesium is still hovering below normal, so we continue the IV magnesium on a daily basis at home. We give him magnesium twice a day in his tube feedings on Monday and once on Tuesday morning, but he sure does have very watery diarrhea from it, so we continue with the IV stuff for now. I did get to access his infus-a-port again today and both Tommy and I did pretty well. The trick for me is to not get too near the edge of the port site so it draws blood more easily. Guess I'm an "edge" kind of person! I imagine it will come better to me in time. I don't know all the tricks yet, but it is not a difficult thing to do. I'm sure Tom could do it if he wanted to learn the in's & out's of the technique. We were done early in clinic (for a Tuesday), so we prolonged our stay by visiting Sue and Dr. Kurtzberg over on the bone marrow unit (guess we didn't know what to do with ourselves getting done so quick! haha!). We also got to see Dr. Katz who was the PICU intensivist when Tommy was there in the PICU. He was glad to see the positive outcome of their hard work. I know they see more bad results than good over there. They were checking on a patient on the bone marrow unit. Now, anytime PICU doctors come calling, it is not good. Sounded like a child was having breathing difficulties and Dr. Kurtzberg called them over to look. We also ran into Alisha's mom. Alisha has 100% donor cells, but her transplant is being complicated by pneumonia. Her webpage is www.caringbridge.com/fl/alishajohnson. Another mom stopped me in the hall as well. Hilary is a 13 yr old who is 40+ days out of "transplant" with cord blood and still has no measurable white cells growing. They did a bone marrow biopsy on her last week and should know the results perhaps as early as tomorrow. Her webpage is www.caringbridge.com/page/hilarycarpenter. Please pray for all these children. We are grateful to God for Tommy having a good weekend (especially going to Nana's!), for increased mobility under his own steam, and for better blood counts this week. AND......(drum-roll.....)>>>>>WE GOT OUR CHRISTMAS TREE/DECORATIONS DOWN!!!! Now if the house would only clean itself, I'd be all set! My day though was dampened by not being able to see Yousef's mom, Mae, before they left for Kuwait this morning. This, however, was tempered by seeing Chris S. and his mom... and he was so very happy! He had gotten a new playstation and he had a new friend as well, with whom he was chatting up a storm. His skin is looking really very good. Chris had such horrible GVHD of the skin, that it is difficult to describe. He is still needing dialysis 3 times a week. His father, Ed, has gotten a job now in Raleigh and things are looking brighter for them as a family. We also saw little Kyle who was transplanted back in 1999 when we were there for the first go-around. He was a baby then and is a little boy now! He was there for an annual check-up. His parents looked well and they all were happy. Little Mr. Austin was running full-steam and I just wish I could harness some of that child's energy for myself. I have never seen a transplant child with so much energy so early out! It's incredible. He has great parents! Thank you for your continued prayers for Tommy and for all of these children who are our greatest examples of Christ's love. " Now may the God of peace who brought up our Lord Jesus from the dead, that great Shepherd of the sheep, through the blood of the everlasting covenant, make you complete in every good work to do His will, working in you what is well pleasing in His sight, through Jesus Christ, to whom be glory forever and ever. Amen. " Hebrews 13: 20-21. Amen! 24 Mar 2001 (Day T+211) "The Lord looks down from heaven upon the children of men, To see if there are any who understand, who seek God. " Psalm 14: 2 We have lost our little friend Yousef today. He is now cradled in the Lord's arms, free from the strife and struggle of this earthly world. Another soldier in God's army who showed us how to be brave, strong, and true in the face of incredible adversity. His physical body endured the pain and the assault on it that a transplant patient must go through. Like a caterpillar, when it metamorphoses into a beautiful butterfly, it has to spread its wings to make them strong enough to fly. Yousef was just learning to spread his wings to fly and something terrible happened to him. One of a number of true heroes felled just as they were trying to spread their wings to fly. Your body may not be here with us physically, Yousef, but your spirit and happy smile shall remain. This is the greatest gift we learn from the pain of losing another transplant friend: the courage of the children in the face of daunting physical challenges reflects the grace of Jesus that we adults should strive for in our lives each day. The children have taught us so much. Thank you God for the children. Here's to you, "Scooby Doo" Yousef! We could tell you were special! " But Jesus called them to Him and said, 'Let the little children come to Me, and do not forbid them; for of such is the kingdom of God.' " Luke 18: 16. AMEN! 20 Mar 2001 (Day T+207) tired (tIrd), adj. fatigued; weary. [Websters New World Dictionary]. "WHEW". Tired just doesn't describe it at all, folks! But I think we know what "chronic fatigue" is now. hahahaha (sick humor). Another trip to Durham completed. The preparation for the trip itself is a feat. Driving and staying awake down and back is another accomplishment. Getting Tommy and all his gear to the 4th floor of the clinic is interesting too, especially if you were to be by yourself. I would never go by myself for an all-day clinic visit. I wouldn't be able to do it. Just having an extra person to carry some of the load is badly needed! It is helpful that they let us park right next to the clinic these days for a $3.00 fee. We are glad for that! Tommy has perked up since Sunday. Less diarrhea and fevers and moving around more. We are thankful for that. Our clinic visit today was uneventful. Tommy's platelets have gone up to 160,000. Since his hospitalization of December, they have just been over 100,000, which is good, but not like the 300,000 count prior to this last illness. It is also another good indicator of getting control of the graft-vs-host disease in his intestines. His magnesium level is hovering at the low end of normal to just below normal, so we are still on IV Magnesium at home. Tommy had his infus-a-port (IV access port under the skin) re-accessed in the clinic...by.....Mommy!!! This was my second lesson over the past two weeks and I hit the right spot again! Tommy did a lot less screaming this time than he usually does. He starts crying as soon as an event is anticipated, so he gets worked up rather quickly. I think having one of his favorite nurses there with us, Anne, helped. She is Tommy's "Scooby Doo" pal. We call her "Scooby Anne". The down side of things is that Yousef, our transplant friend, is doing very poorly. His lungs are getting so stiff that they do not want to take up oxygen. He is critical. I could kick myself for not going to see them today when we were at clinic. I had good intentions, but that's where it ended. Now, I get home and read his webpage and the bad news. I really wish I had been there to give his mother a big hug. She is so brave. She is so willing to accept whatever God's will is, whatever the outcome is, but, of course more than anything, she wants her child to survive. Please pray with us for his life and for his family who are trying to cope with the possibility of losing their beloved family member. I have written sentences like this so many times in the past year and a half that we've been at Duke, knowing that we are still blessed to have Tommy with us. It does not get any easier to accept, however, when our transplant friends are suffering around us. It is always "WHY?" and the not knowing. But it is not for us to understand why and to know. If we trust in God and allow Him to direct our steps, our paths will be made clear. Thank you for listening. Thank you for your prayers. God bless you! "Sing praise to the Lord, you saints of His, and give thanks at the remembrance of His holy name. For His anger is but for a moment, His favor is for life; Weeping may endure for a night, But joy comes in the morning...You have turned for me my mourning into dancing; You have put off my sackcloth and clothed me with gladness, to the end that my glory may sing praise to You and not be silent. O Lord my God, I will give thanks to You forever." Psalm 30: 4,5,11,12. Amen! 18 Mar 2001 (Day T+205) Hi all! Our days here at home have not been boring or relaxing! Just plain busy, very busy. Tommy's drug levels (tacrolimus) have not risen. As of Friday, he was still hovering in the single digit range, barely registering any level at all. This is the immunosuppressant drug that keeps his T-cells under control and his graft-vs-host problem. Before we left Durham his drug level was over 10. This week has been another story. Along with the drop in drug level and the resurgence of the graft-vs-host disease comes diarrhea, lots of it, fever, lethargy, nausea, vomiting. We were able to contact Dr. Kurtzberg and she gave us orders to increase his Tacrolimus medication and also to give him an extra large dosage of steroids. This, along with cutting back on the strength of his tube feedings, has worked, so far. He has perked up today, his stools are less, he's more animated and just plain better! Thank you God! It is so frustrating to feel so helpless to help your child! We will be going to Duke again this Tuesday, only problem is Sue and Dr. Kurtzberg will be taking care of the inpatients and won't be in clinic. The good side of it is, we'll probably get home sooner! hahahaha!! Please pray for Jenna, as she struggles with problems with hormone imbalance and osteoporosis, as well as healing from her hip surgery. Pray too for Yousef who is still in PICU on a ventilator. Still no word on what is causing his breathing problems. Apparently one of his lungs collapsed yesterday and they had to increase his ventilator settings. Thanks for the many prayers for Tommy and the other children going through this bone marrow transplant process. 15 Mar 2001 (Day T+202) Well, we've been home a week and it feels great! Tuesday was a typically long day at Duke. We didn't get home until 9 or 9:30 pm. Unfortunately we found out yesterday that Tommy's immunosuppressant drug level has taken another nose dive. We think it is from using an older bottle of the drug mixture. It's a pretty expensive drug to be losing it's potency so quickly (can you say $$$ out the window??!!!). Anyway, we are going to repeat the drug level tomorrow and go from there. Tommy has been running some low grade fevers, especially in the evening and is having some nasal congestion again. Not something we want to see. I will always have this Epstein-Barr virus thing in the back of my head, since this is how it all started before. We are trying to get him and his teachers/therapists from the local school system lined up again. He has missed almost 2 full years of schooling and is lacking the energy and discipline it takes. We will still have homebound schooling for probably another year unless his immune system makes an amazing comeback. It is not the same as being in a school with classmates and all. Tommy really has no little pals to play with, being isolated for so long. He still thinks mommy and daddy are his playmates. This, I know, will eventually change. This morning, I woke up with a horrific sinus headache and have felt lousy a good part of the day. Luckily, Tommy was willing to be a couch potato with me. If he felt better and could run around like he used to, I would've been in trouble. Please pray for our young friend, Yousef, who is still on a ventilator in the PICU at Duke. He is 10 months post-transplant and has something going on in his lungs, unidentifiable at this point. The doctors plan to biopsy his lungs because so far the cultures from his lungs have not grown anything. A biopsy is risky for Yousef because of bleeding potential. Please pray for this remarkable young man. He has been so brave and strong through all of this. He has an incredible family. Continue to pray for Chris S. who has had more problems with bleeding lately and continues on dialysis. Pray also for Amir, Austin, Alisha, Hilary, Heaven, Jasmine, Jenna, Jordan, Thomas, Kyle, Hunter, Summer, Logan, Michelle, Maddy, Julia, Jon, Andrew...the list is so long. Continue to remember those families who have lost their young heroes in the hope of new life. God bless you all. " Fear God and keep His commandments, for this is the whole duty of man." Ecclesiastes 12:13. Amen! " A man's steps are of the Lord; How then can a man understand his own way?" Proverbs 20: 24. AMEN! 11 Mar 2001 (Day T+198) HOME SWEET HOME!!! Yes, it is truly good to be home, home!!! We never figured that we'd be stuck in Durham again for almost 3 months with Tommy. Another holiday season come and gone at Duke. Next year we don't want to be there for the holidays OR his birthday! Our house is a disaster! Stuff all over the place! Sacks, boxes, medical supplies, toys, videos, stuffed animals, and Christmas decorations! Yup! I am going to try to get the tree and the decorations down this week! We did have "Christmas in March" on Thursday evening after we got home. Tommy ripped through all the presents he still had sitting there under the tree. Nana came over to observe the event. Tommy laid in bed with us the night before we came home, wide awake, calling out for (you guessed it!), "NANA!" He was so wired he didn't sleep much. Luckily we had both cars down in Durham or we would have never been able to pack all of our supplies and miscellaneous junk in one car with us! It was a beautiful site seeing that wonderful green "exit" sign to our hometown. Tommy's stools have slowed down some the past two days and he has only gone about once during the night time. Tonight I took out his IV access needle from his infus-a-port site. Dr. Kurtzberg wants us to try giving the magnesium in his food again and give his skin a break as well. Let me tell you about the screaming that goes on when tape has to come off! HA! Actually it came off rather easily, but that didn't matter to Tommy. He loves to scream whenever you have to mess with him. Guess it's his only defense! Tuesday we will be driving back down to Duke for the usual day-long clinic visit. It might be a longer than usual day (can't fathom that!) since he will have to have his infus-a-port reaccessed with another needle and then labs drawn after we get there. He may end up needing an IV magnesium bolus too if the oral doses aren't quite enough to keep his level up. Unfortunately we will miss seeing Jenna and her mom, Kay, our transplant friends from VA. They will have been down on Monday instead of the usual Tuesday routine. Please pray for Yousef and Amir. Yousef was back in the hospital with lung/breathing difficulties this week and is now in the PICU (pediatric intensive care unit) on a ventilator. The doctors have now biopsied whatever is going on in his lungs. Pray that it is something very treatable and that he will recover. He and his family are from Kuwait and his mother has been very stressed lately. They have been here about a year now and the rest of the family is in Kuwait. I can't imagine being here all by yourself without any help from anyone and going through all of this transplant stuff. It is incredible! Here is truly a woman of great strength! Yousef's webpage is : www.caringbridge.com/page/yousef. Amir is back home, thankfully, but having to deal with a lot of post-transplant complications. Pray for him and his parents, who are very stressed also. Our hearts are heavy at hearing that another transplant friend of ours, Alex W., passed away this past week from complications going into her third transplant. She was 5 years old, maybe 6 by now, and she would dress up in a beautiful red velvet dress, put on a long brown wig and run up and down the hallways on the bone marrow unit. She looked like the beautiful princess that she wanted to be. Please remember her parents and family in your prayers today as well. God bless you all and thank you for your prayers! Have a great week! "Humble yourselves in the sight of the Lord, and He will lift you up." James 4: 10. Amen! 7 Mar 2001 (Day T+194) " I will love You, O Lord, my strength. The Lord is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust; My shield and the horn of my salvation, my stronghold. I will call upon the Lord, who is worthy to be praised; " Psalm 18: 1-3. Amen! Hello all! We've had a busy week, just one busy day after another!! Nothing new there! The GOOD NEWS is that we are preparing to head HOME to VIRGINIA!!!! YIPPEEE!!! Tommy's immunosuppressant drug levels have stayed high enough to the doctor's liking that she decided he can change over from the IV antifungal to the "oral" form. This gets us our ticket out of town! Unfortunately she has decided to take Tommy off a new antibiotic used for the resistant staphylococcus bug to a drug that interacts with just about everything else he is on! This may give us another headache and another round of Graft-versus-host (GVH) flare-up. Also, since he has his spleen removed, he has to be on an antibiotic for that too (for life), so more antibiotics. Tommy is on FIVE different type of antibiotics, antifungals or anti-somethings. Diarrhea is sure to hang around for a lot longer. We hope it does not get any worse. She put him on Erythromycin and I am having big concerns about that one. We shall see! I thought she was going to put him on Zithromax which he tolerates a lot better. I hope we will not be coming back down here sooner than next Tuesday. Tommy slept through the entire night Monday night without having any stools and we couldn't believe that we had actually experienced our first night of sound, uninterrupted sleep in who-knows-how-long! It sure makes a BIG difference in the way a person feels in the morning!! Tommy has been sneezing and acting a bit stuffed up nasally lately and we will watch this closely since this is how the Epstein-Barr virus mess started in the first place and everyone thought it was just sinus congestion. They did send some blood off Tuesday for testing to see if Tommy has "copies" of this Epstein-Barr virus in his blood. He should have close to nothing. This will take at least a week for results since it gets sent to California. On our way back from speech therapy today we ran into another transplant buddy, Jon. His mother told us that he had strep throat, but other than blisters in his mouth, he had no fever, no sore throat, nothing. She was disappointed because they were ready to head home this week too. Such is transplant life! You just never know when the unexpected is going to pop up. It requires a lot of mental "versatility" (or insanity), to say the least. Please continue to pray for our son's recovery, because going home doesn't mean that everything is all of a sudden "all better", it is just the start of beginning all over again. We are thankful to God for a chance at new life for our son Tommy. Without transplant, he would not be here today. Perhaps in the future, research in gene therapy will find a cure for his fatal genetic disease. Thank you for all your prayers. " To those who are called, sanctified by God the Father, and preserved in Jesus Christ: Mercy, peace, and love be multiplied to you. " Jude 1,2. Amen! 1 Mar 2001 (Day T+188) Another day of praise out of the uncertainty that is post-transplant life! First of all, we want to tell you how Tommy was very brave lying very still for this bone scan today. It took at least a half an hour. He was quite scared, but calmed down with the help of a very nice nurse. He also surprised us by emptying his bladder "on demand" because once they started the pictures, his bladder lit up like a balloon and they couldn't see anything else! So, we tried to get him to go and he did! He usually doesn't respond well to pressure situations, but he cooperated this time and we were oh so glad. We didn't want to have to wait until he decided he would "go" (whenever that would've been!). You all know he has held his urine for over 24 hours before. We got word from Dr. Kurtzberg shortly after we arrived back at the hotel that his bone scan was negative for any bone disease like avascular necrosis or any type of inflammatory disease. Thank You, GOD! Good news is always welcome here! Even better news is that Tommy is moving around much better, with minimal support, although he loses his balance sometimes. He has been wandering around this suite like the Tommy of old. It is good to see him trying to get into mischief! We still have plenty of diarrhea to put up with, but that may continue for several weeks or months, so we're told. Another piece of good news today is that Tommy's immunosuppressant drug levels are up for the first time since discharge! Yippee!!! We hope it will stay that way. Home will be a lot closer if it does! That's it from here. Thanks for all your nice comments in our guestbook. Thanks for getting us past ourselves sometimes. It's not hard to feel self-pity in this situation. We have been at this for so long now, that we don't feel much of anything anymore, but sometimes it just gets to be more than we can stand at any given moment, and it overwhelms us. We appreciate your prayers and friendship. God bless you as much as He has blessed us!! " But indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ and be found in Him, not having my own righteousness, which is from the law, but that which is through faith in Christ, the righteousness which is from God by faith; that I may know Him and the power of His resurrection, and the fellowship of His sufferings, being conformed to His death, if, by any means, I may attain to the resurrection from the dead. Not that I have already attained, or am already perfected; but I press on, that I may lay hold of that for which Christ Jesus has also laid hold of me." Philippians 3:8-12. Amen! 28 Feb 2001 (Day T+187) Hi everyone! Tommy and Nana had a grand time being together as is customary when those two are put in the same room! It has been good to hear our little buckaroo laughing and giggling uncontrollably! Mostly, Tommy can just look at his Nana and bust out laughing. They are so silly together! It has been a good thing for Tommy to have company. Yesterday at clinic he told Dr. Kurtzberg that he wanted to go "home" and he was rightly upset when she said perhaps next week. He is really missing his own home and so are we. Yesterday was a long day at clinic, as Tuesdays usually are but we were able to hook up with our transplant friends, and that is always a bright spot in the day. Chris S. was in clinic and is looking really good. His father, Ed, has thankfully now gotten a job in Raleigh. It has been a long time since Ed has been able to go back to work. Austin was full of so much energy for only being 56 days out from transplant!!! His platelets are over 130,000 and his parents are excited. Michelle is looking like a lovely young lady. She's gotten her driver's license now, which makes her parents nervous, but that's understandable!! We also saw Amir and his mother!! We did not get to talk, but Amir was walking fairly well, not so stiffly as I had seen him walk in the hospital. Conner was in clinic today and received a nice birthday "cookie", compliments of the clinic staff! He looks like he is doing very well. He has a great head of thick hair. Tommy is losing his hair again, probably from his GVHD (graft-versus-host disease) but he has new sprigs of hair coming in as well. The biggest miracle yesterday was Tommy getting off the bed in the morning and trying to walk under his own power!!! He was still limping some with the left leg, but he was bearing weight some better than anytime in the past two weeks! What a big relief!!! Nana is trying to take credit for this. She says it is because she came to visit! His walking is continuing to improve today. Dr. Kurtzberg still wants Tommy to have a "bone scan" (special type of Xray using contrast) tomorrow (Thursday) to rule out "avascular necrosis." Her plan for controlling the GVHD in his intestines is to use minimal IV steroids and increase his immunosuppresant drug (FK506) to a therapeutic level. Today he got an extra oral dose of this drug to help in getting his level up to where it should be. Tomorrow they will check the level of this drug in his blood and hopefully it will be up. If we cannot get the level up to where it should be, and maintain that level, then we will have to go back to the IV form of this drug. If he is adequately absorbing the oral form of this drug then next week Dr. Kurtzberg will let us switch his anti-fungal drug (voriconazole) from IV to oral form, thus making it possible for us to return home to Virginia!! Thanks for the many prayers for Tommy and the other families going through this long transplant process. 26 Feb 2001 (Day T+185) Today we had to go to clinic for bilateral hip x-rays. This was done after Tommy had x-rays of his left knee, lower leg and foot on Friday. The x-rays on Friday we were told were "negative". The hip x-rays done today showed some "irregularity" on the right side, which was inconclusive. Tommy will have a bone scan sometime in the coming days. All of this because Tommy is having trouble bearing weight on his left leg. Via e-mail, Dr. Kurtzberg says she needs to rule out "avascular necrosis" which sends panic into our heads. If any of you have kept up with another transplant child, Jenna, she has gone through hip replacement because of "avascular necrosis" in one of her hips. Needless to say, we are very concerned. Dr. K. says this is "treatable", especially if caught "early". We are not sure what that means. Most of the information we have gathered from websites talks mostly about surgical intervention being the only treatment. We have learned that x-rays may not show avascular necrosis if it is in the "early" stages. Thus, the bone scan, which is, supposedly, more telling than the x-rays. We are also still having problems keeping Tommy's immunosuppressant drug levels up. They have not budged from just beyond the "5" range for over a week, despite several increases in the medication dosage (5 being the low end of where they want to keep Tommy's levels; 8 or 10 would be better). And the diarrhea continues, which means the GVHD of his intestines is not being controlled adequately and his immunosuppressant drug is probably not being absorbed very well. Finally, Dr. Kurtzberg will be in clinic tomorrow and we have A LOT of questions for her. Please pray for Tommy to clear this latest hurdle. The obstacles just never seem to end. Other than that, it was a beautiful day here in Durham! Nana has come to see Tommy and it has made him VERY happy! " Now faith is the substance of things hoped for, the evidence of things not seen...By faith we understand that the worlds were framed by the word of God, so that the things which are seen were not made of things which are visible...But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him. By faith Noah, being divinely warned of things not yet seen, moved with godly fear, prepared an ark for the saving of his household, by which he condemned the world and became heir of the righteousness which is according to faith. " Hebrews 11:1,3,6,7. Amen! 24 Feb 2001 (Day T+183) Tommy had a pretty good day today. Mr. Eudailey from the Durham Church of Christ came by for a visit and Tommy really enjoyed it!! Tommy's blood pressure has been normal and his diarrhea has slowed down. However, he still cannot bear weight on his left foot. X-rays taken yesterday show no fractures which is good news but we still do not know what is causing so much pain in his left heel. He still has not been seen by physical therapy. Also, we were unable to meet with Dr. Kurtzberg yesterday so we still do not have any answers as to the near term plans for Tommy and when we will be able to take him back home to Virginia. One of Tommy's IV drugs is definitely keeping us here in Durham. It is called voriconazole, an experimental anti-fungal drug, which when prepared in IV form is only stable for 24 hours. Thus, this drug has to be mixed and delivered to us each day. There is simply no way possible we could get this IV drug each day if we go back to Virginia. There is an oral form of this drug which they can dispense a month's supply at a time, however, Dr. Kurtzberg does not want to switch Tommy to this oral form until she is sure his GI track is functioning properly (so the drug will get fully absorbed and give him the anti-fungal protection he needs). They suspect his GI track is not fully absorbing medications because they have had to increase the dose of his immunosuppresant drug because the level of the drug measured in his blood was lower than it should be. They will re-check the level of this drug in his blood on Monday. Hopefully the level will be up, which would indicate that his GI track is absorbing the drug. If his GI track can properly absorb the immunosuppresant drug, then it follows that it should be able to absorb the oral form of voriconazole. Linette went back home to Virginia yesterday so she could work today. She will return tomorrow (Sunday). Thanks for the many prayers for Tommy and the other families going through this long transplant process. 22 Feb 2001 (Day T+181) SIX MONTHS OUT FROM TRANSPLANT!!! A taste of wintry weather here again in Durham! Snow first, then sleet, topped off with some freezing rain mixed with rain. Your typical "winter's mixed bag". Tommy's blood chemistries are holding their own. We have not checked a blood cell count since Tuesday. Tommy's magnesium is being supplemented with daily IV magnesium. We are supposed to meet with Dr. Kurtzberg tomorrow afternoon. Hopefully she can answer some of our questions and tell us what her plans are for Tommy in the near future. Last night was a better night for Tommy as far as diarrhea was concerned. Only two stools all night compared to 6 during the previous night alone. His blood pressure, however, is climbing. We will keep an eye on it. If it stays high he will have to be restarted on anti-hypertensive medicine. This is most likely from the steroids he is on. This (steroids) could explain his out-of-sorts behavior too: the screaming, carrying-on, and generally nasty behavior we have been seeing from him lately. It seems like it will take an act of God to get physical therapy to see him, though. I can't imagine these people are that busy. I would like to get some answers to why he can hardly move his legs to walk. He keeps pointing to his left heel as the spot that hurts so much to walk on. Go figure! That's all the news for now. Thank you for all your prayerfulness for us and all those families going through transplant. It is appreciated so much! " Grace to you and peace from God our Father and the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. For as the sufferings of Christ abound in us, so our consolation also abounds through Christ. " 2 Corinthians 1: 2-5. AMEN! 21 Feb 2001 (Day T+180) Hello all! Tommy has had a bit of a setback with the GVHD (graft-versus-host disease) of his gut flaring up again. Lots of diarrhea through the night and day. We have had to go back to IV steroids and may have to change him immunosuppressant (FK506) from oral back to IV form if the steroids don't work to bring the diarrhea under control. Needless to say, this makes us somewhat depressed as far as thinking that we'd be going home in the next week. I guess we'll see. Always in "HIS time" and not our own. When will I ever learn?? Tommy has been pretty cranky and screaming a lot for anything we have to do with him. We are waiting for the police to show up at our hotel door wanting to know what's going on. I think Tommy has had enough of all of this (I know we have!) and is letting us know it in no uncertain terms! We are waiting still to have physical therapy look at him. He seems to have rotating pain in both legs and feet. Kind of strange. Being outpatient has not been an easy go. There is more to do here than any one person could handle by themselves. It has been increasingly difficult to even try to get home to work a day or two. I am not sure when the Christmas tree and other holiday decorations will ever get put away. Maybe I'll just leave them up until next December! Some day we will be able to mail Grandma Boots her Christmas present and Uncle Harry his! Thanks to those of you who have taken time to call or write or leave us messages on the guestbook! After all of this time struggling with our sick child it is not hard to feel the self-pity of isolation and aloneness. Your encouraging words help so much. Thank you to the folks from the Durham Church of Christ who have volunteered their time to sit with Tommy. Although, it is impossible for us to leave Tommy at this point, with all the medications he is getting almost every hour, we appreciate them thinking of us. Hope to have better news for you in the next update. I am very thankful for a loving husband who cares for his little buckaroo very, very much and who does such a great job of taking care of him and me! Unfortunately we have heard that little Hunter (a girl) died yesterday in the PICU as well as another Saudi child, about a year out from her transplant, from pneumonia. Pretty scary for us to think of. Please continue to pray for Amir, who had another seizure last Friday is having some neurological difficulties with walking and talking. Pray also for Chris S., who finally left the hospital yesterday!!! YEA Chris!!! Remember all of those still on the transplant unit: Adam, Franklin, James, Alex W., Hilary, Alisha, Summer, Logan, Julia; also continue to remember Yousef, Jenna, Michelle, Jordan, Thomas, Maddy, Jasmine, Jon, Andrew, Austin, Kyle, Hunter, Stephen, Joy, and the rest of the children who have been through such a trial as transplant. Especially remember parents who have recently lost their little lambs, Max, Shannon and Hunter. Our hearts are heavy with you but the promise of salvation is still here with us. " And I say to you, My friends, do not be afraid of those who kill the body and after that have no more that they can do. But I will show you whom you should fear; Fear Him who after He has killed, has power to cast into hell; yes, I say to you, fear Him! Are not five sparrows sold for two copper coins? And not one of them is forgotten before God. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows. " Luke 12: 4-7. Amen! " 'Therefore let all the house of Israel know assuredly that God has made this Jesus, whom you crucified, both Lord and Christ.' Now when they heard this, they were cut to the heart, and said to Peter and the rest of the apostles, 'Men and brethren, what shall we do?' Then Peter said to them, 'Repent, and let every one of you be baptized in the name of Jesus Christ for the remission of sins; and you shall receive the gift of the Holy Spirit. For the promise is to you and to your children, and to all who are afar off, as many as the Lord our God will call.' " Acts 2: 36-39. Amen! 18 Feb 2001 (Day T+177) "Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths. Do not be wise in your own eyes; Fear the Lord and depart from evil. It will be health to your flesh, and strength to your bones." Proverbs 3: 5-8. Amen! Tommy has had a good weekend. We did not have to go to clinic but did draw blood for labwork this morning. The immunosuppressant drug level in his blood was way below what it should be. In fact, it had been trending in a downward fashion for most of the week. Tom insisted that it be checked today instead of waiting another day, and sure enough, it was very low. This means that his graft-vs-host disease affecting his intestines could flare up and cause more diarrhea and other symptoms. So far, he has had a bit more diarrhea this weekend, but has tolerated his tube feedings. We were told to increase the dosage on this medication, so I doubt if tomorrow's level will be much better after one increased dose. We are also going to ask for a physical therapy re-consult to determine why Tommy is having trouble walking again. I don't know if his orthotic inserts in his shoes are the problem or if something else is going on. Tommy has been much more animated today than at any time in the past week. It is good to see him happy and smiling at least part of the time. There is not much room to move around in here and he always seems to be tethered to an IV pole or a feeding pump. How much fun is that for a six year old? How much fun is it if you can't even chase after your toys because it hurts to move your legs? We are definitely feeling homesick, more with each passing day. Pray for our sanity because we don't have much left. It has definitely been easier these past months to read the Scriptures than to actually live up to them. I hope God will forgive us for all the times we've failed in being "doers of the Word". " Grace and peace be multiplied to you in the knowledge of God and of Jesus our Lord, as His divine power has given to us all things that pertain to life and godliness, through the knowledge of Him who called us by glory and virtue, by which have been given to us exceedingly great and precious promises, that through these you may be partakers of the divine nature, having escaped the corruption that is in the world through lust. " 2 Peter 1: 2-4. Amen! " We also have the prophetic word made more sure, which you do well to heed as a light that shines in a dark place, until the day dawns and the morning star rises in your hearts; knowing this first, that no prophecy of Scripture is of any private interpretation, for prophecy never came by the will of man, but holy men of God spoke as they were moved by the Holy Spirit." 2 Peter 1: 19-21. AMEN! 16 Feb 2001 (Day T+175) "Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take. Amen. " Please pray for the mercy of the Lord to grant heavenly rest to Shannon's soul as she passed from this world last night. Her father was distraught that he had never taken her to church. Shannon was 17. Also be mindful of Max's parents as this brave little boy's soul went to rest in paradise last night. Thank you for your prayerfulness. Will update more later. Hi again. Today was another clinic day and if we are lucky we will be able to skip going in over the weekend. Tommy's diarrhea is holding steady. No increase in it. His magnesium levels are up and down. He is needing IV supplements daily, so we will be doing another IV med here at "home". We are aching to get home to Virginia, to our real home, our jobs, and everything familiar. I think Tommy is rather depressed about being here so long and going to clinic. He gets irritated easily and is very fussy when we go, whereas, he used to enjoy going and socializing with the staff. Nowadays, he doesn't want anything to do with them. It used to be "fun", now it's just a "drag". He also misses his Nana very much but she is not able to get down here to see him. I think Tommy would take seeing another familiar face to play with quite readily. He is getting sick of looking at just our faces here. Not to mention, we are too tired to "play" most of the time, so we are quite "boring" to him. He is still having trouble walking. His muscle tone is very poor and he has been favoring the right leg so much that the weight he has put on his left leg is now making that leg & foot painful. We will have to get physical therapy to reevaluate him next week. On the clinic end of things, Dr. Kurtzberg has been out of town and will still be out of town next Tuesday, our usual clinic day. We have not seen her since our discharge. No one in the meantime will tell us when we can look forward to going home or when we can switch over some of his IV medication to get us home any quicker. This means at least another 10 days or two weeks down here. We are getting pretty antsy. (BIG understatement, big SIGH)! I know my impatience is showing again. When will I ever learn, huh? God bless our neighbors, the Kolevs, who have been picking up our mail almost everyday for the past year and a half already!!! They are great neighbors! All in all, it has been a rather somber day. We have been thinking of our transplant friends and their recent losses. Thank you for praying for them and us. " And I saw a new heaven and a new earth, for the first heaven and the first earth had passed away. Also there was no more sea...And I heard a loud voice from heaven saying, 'Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people, and God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying; and there shall be no more pain, for the former things have passed away.' Then He who sat on the throne said, 'Behold, I make all things new.' And He said to me, 'Write, for these words are true and faithful.' And He said to me, 'It is done! I am the Alpha and the Omega, the Beginning and the End. I will give of the fountain of the water of life freely to him who thirsts. He who overcomes shall inherit all things, and I will be his God and he shall be My son. But the cowardly, unbelieving, abominable, murderers, sexually immoral, sorcerers, idolaters, and all liars shall have their part in the lake which burns with fire and brimstone, which is the second death.' " Revelation 21: 1,3,4-8. Amen! 14 Feb 2001 (Day T+173) Happy Valentines Day!!! Tommy had a good day today. It was his first day back in the clinic since right before Christmas. He really enjoyed making and giving out valentines today to some of the staff!! Please pray fervently for Max and his family. They have decided to take Max off the ventilator after receiving the devastating news that the fungal infection in his lungs has now spread to his spinal cord and brain. Also, pray fervently for Shannon and her family. She is a 17 year old girl who has the same fungus that Max has. The doctors have told her parents that she will not make it. Thanks for all your prayers. 13 Feb 2001 (Day T+172) YES!!! We have made it OUT of the hospital!!! YIPPEEE!!!! It took until 5pm, but we got out! It is rather a complicated ordeal to get discharged from the bone marrow unit. A ton of prescriptions, IV medications to finish, home health care to coordinate, a lot of phone calls to and from home health care, etc, etc...! Tommy is on FIVE new medications this time out, besides the six he was already taking before admission. I counted 26 medication doses we will be giving throughout the day, from 7am until after midnight. WHEW!!! We spent a bundle on just six of them today. Thank goodness for insurance co-payments! I just don't know how people can survive without having insurance for this kind of stuff. We would have been out on the street a long time ago if we didn't have any. I am wondering how we will make it to clinic tomorrow with all the drugs we have to give, but Tom thinks it will be "okay"!!! It will take a few days to get more organized. The hotel suite we are in is a whole lot more crowded now with toys, drugs, supplies, diaper gear, food... but we are so happy to have Tommy back here with us. It felt good to crawl into bed together for the first time in almost 2 months. (Yes, all three of us are in ONE bed!). Tommy tends to crowd out anyone in his way. He is the ultimate "bed-hog"! He is also looking forward to getting to Nana's house to "tear" it up! He can't wait! He is going to have to be a little more patient though, since we will be here in Durham for who knows how much longer. On a more serious note, please be very prayerful for Max, who is very early on in post-transplant, became infected with the same Epstein-Barr viral lymphoproliferative disease, has had bleeding into one of his lungs, and has a very stubborn fungal infection in his lungs as well. This all happened before he really started to make any white cells or other cells from his cord blood transplant. His situation is very, very serious. He is on high ventilator settings and his parents are hanging onto the hope that he will survive, by the grace of God. Also remember a little girl named Hunter who is in the PICU with fluid around her heart, receiving kidney dialysis, and fighting a fungal infection in her body as well. There is also a very young baby in the PICU named Marcus, but I am not quite sure of his difficulty. Before we left we did see Amir walking in the hall from his room to the lounge! Yea, Amir!!! It is a bittersweet day, "discharge" day...having gotten better, but leaving behind those who are still so sick with hopes of their own of getting better and getting discharged. We pray for healing and health for all. We love you! God's blessings be yours each day! " Finally, my brethren, be strong in the Lord and in the power of His might. Put on the whole armor of God, that you may be able to stand against the wiles of the devil. For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand. Stand, therefore, having girded your waist with truth, having put on the breastplate of righteousness, and having shod your feet with the preparation of the gospel of peace; above all, taking the shield of faith with which you will be able to quench all the fiery darts of the wicked one. And take the helmet of salvation, and the sword of the Spirit, which is the word of God; praying always with all prayer and supplication in the Spirit, being watchful to this end with all perseverance and supplication for all the saints-- " Ephesians 6: 10-18 AMEN! 12 Feb 2001 (Day T+171) Today is another day to sing praises to the Lord! Thank You Father for walking us through another hospitalization, another journey of transplant. Thank You for healing our son, Tommy, from the obstruction of his airway caused by a meager virus. Thank You, Father for helping the doctors here find the graft-vs-host disease raring its ugly head in Tommy's intestines. Thank You, Father for helping the IV medicines work to make him feel better. Thank You, Father, for banishing the fevers and lessening the diarrhea. Thank You, Father, for Tommy smiling again and playing again and watching TV again! Thank You, Father, for our son and his tenuous health and we pray that if it be Your will, Father, that his health may improve steadily each day, each month. Thank You, Father, for the blessing of another day with our son because we have experienced only a tiny little piece of what some of our transplant friends here have gone through in fighting, but often losing, the battle for their precious children. Thank You, Father, for stronger Tommy legs! Thank You, Father, for hope because You are the source of all hope. Thank You, Father, for Jesus, who has shown us the way. Who has endured more than we could ever endure ourselves. Thank You, Father, for the children who are the epitome of hope themselves and how they show us so very much that we would never have known without them. YIPPEE!!! We are planning on being discharged tomorrow (Tuesday) if all continues to go well!! It will be a hectic few days from here, but what's new there???!! Continue to keep these children up here in your prayers: Max, Hunter, Marcus, Chris S., Adam, Franklin, James, Amir, Alex W., Hilary, Alisha, Summer A., Michael, Heaven, Logan, Summer M., Shannon, Julia. Continue to remember Jenna, Michelle, Jasmine, Maddy, Jordan, Thomas, Kyle, Hunter, Alex S., Courtney, Sadie, Austin, Jon and the list goes on....Remember the parents of those who did lose their precious children. 10 Feb 2001 (Day T+169) Tommy walked to both ends of each hallway tonight without his walker, by just holding our hands!!! His strength is improving each day. He sat up a lot today and played with his toys and watched some of his videotapes. Mr. Jerry Pence from the Durham Church of Christ came and stayed with Tommy for a couple hours this afternoon so that we could get out and enjoy the nice weather together. Tommy has been tolerating well the increases in his tube feedings and they have been correspondingly cutting back on his TPN (IV nutrition). They started Tommy on a new antibiotic called Linezolid for the MRSA (methacillin-resistant staph aureus) organisms in his nose/sinuses. Good news, Amir is now out of the PICU!! This afternoon he was moved back to the pediatric bone marrow transplant unit (5200). Thanks for the many, many prayers for us and all these children and their families going through this bone marrow transplant process!!! Note: Check out the two new links added to Tommy's "Favorite Links" Page!! One is a teaching site that has excellent images with explanations of various blood cells and bone marrow cells (both normal and abnormal). For you transplant families this site is also a great place to look for definitions and explanations of the various morphology terms you see all the time on those white cell differentials!! The other new link is for a world class clinical pharmacology site where you can look up information on all kinds of drugs. 9 Feb 2001 (Day T+168) Tommy is walking to both ends of each hallway now!! YEA!! He is getting stronger and soon, hopefully, he won't need a walker. We also had a pleasant surprise seeing Chris S. at Tommy's door! His nurse and mother had gotten him out walking. Chris was so tired he got into bed and fell asleep soon thereafter! Thank you to everyone who has sent cards and little surprises to Tommy! He was happy to get things in the mail. It's amazing at how such a thoughtful little something can cheer up someone stuck in the hospital! He especially enjoys the animal cards!! We have them all up on our bulletin board so everyone can notice. Tommy got excited tonight when he was disconnected from his IVs for a few minutes! He had the biggest smile on his face! It was great to see! We are going through the process of changing IV medications back to oral, as is appropriate, and increasing his tube feeding volumes every 12 hours as his stomach can tolerate it (i.e., no increase in diarrhea or vomiting). So far he is up to 6 ounces of half-strength tube feeding every six hours. Once we get to 10 ounces of half-strength food then we will start increasing the strength of it until he is back to 10 ounces of full-strength pediasure four times a day. We won't finish this by discharge day but we should be part of the way there. Tommy's repeat culture from his nose done yesterday still shows some MRSA organisms (methacillin-resistant staph aureus). He had been on IV Vancomycin for this earlier, which is about the only IV drug able to kill this organism anymore. We learned today that he will be started on a new oral medication approved recently by the FDA for use on this type of organism. This will help in easing the amount of time Tommy will have to spend connected to an IV pole for IV medications!! We were actually able to sleep for most of the night last night. A "first" in the past seven weeks! We have been blessed by good nursing care and with a good plan of action from the attending physician who has been on these past two weeks. We ran into Amir's father tonight. Amir has gotten off the ventilator and is breathing well on his own. Apparently they have caught the viral meningitis early as he said and an MRI done yesterday showed encouraging news for them. Amir may be moved back to 5200 as early as tomorrow. We do not have any new information about Max or the other two children from 5200 still in PICU. Please continue to pray for those who are just arriving here and those who are still here. Pray for those who have lost their precious children to the struggle for life and those who still struggle everyday. Pray especially for those who go through this journey without the hope and trust in God our Savior. It is such a difficult struggle with faith, that I cannot imagine the journey without faith, without Jesus! Many thanks for your love! " I will love You, O Lord, my strength. The Lord is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust; My shield and the horn of my salvation, my stronghold. I will call upon the Lord, who is worthy to be praised; so shall I be saved from my enemies...For You will light my lamp; the Lord my God will enlighten my darkness...As for God, His way is perfect; the word of the Lord is proven; He is a shield to all who trust in Him. For who is God, except the Lord? And who is a rock, except our God? It is God who arms me with strength, and makes my way perfect. " Psalm 19: 1-3, 28,30,31,32. AMEN! 7 Feb 2001 (Day T+166) Hi everyone! Well, I made it back yesterday, instead of on Monday. Since Tommy was doing so well it was an opportunity to get in an extra day of work. And it was a chance to do a good deed for a colleague who's father-in-law had taken seriously ill. I don't miss the rat race 6:30am commutes in the morning on I-95 though! It was also more pleasant to drive back in the sunshine instead of the rain! Daddy had reported good news for the past 3 days! YEA!!! Only two or three stools each day! YEA!!! Tommy tolerating his feedings in his gastrostomy tube! YEA!!!! His mouth has never looked so good!!! YEA!!! (steroids!) His platelets have quit dropping and his other blood counts are holding! YEA!!! Talk of discharge next week!!! YEA!!! Tommy taking good walks in the hallway!! YEA!! He is still pretty weak, but can support his weight using a walker. There is still discussion going on between the attending physician here and Dr. Kurtzberg regarding tapering off the steroids. I think they are hoping just the immunosuppressant (FK506) will be enough to keep the T-cells from attacking his intestines. They are pleased with his progress over the weekend. He is smiling more and talking more and just being Tommy more. It is good to see. It has been a long time waiting for this kind of progress. There are a couple of children up here getting ready for discharge as well. That is good! Discharge itself is a daunting task. The responsibility the parents have to take in the care of their child is overwhelming! We would like you to be urgently prayerful of Amir, who came in today, critically ill. He was having seizures and is now in the PICU on a ventilator. His mother told me he has meningitis. Amir went through two cord blood transplants, the second one finally engrafting, but had a number of post-transplant difficulties. They have not been home since last summer, I believe. Pray for his parents as well. They are devastated and this has made them lose a lot of hope. It is such a draining experience, trying to take care of a chronically ill child, trying to get them through one tough situation after another. Continue also to pray for Max, who is still on the ventilator in PICU having problems with part of one of his lungs bleeding from a fungal infection (Aspergillis). These children have nothing to fight an infection with and are terribly susceptible to anything and everything. Pray for strength, physical and emotional, for all of these transplant parents, who want nothing more than health for their child. Amir's website is: www.amir-info.homepage.com. Max does not have a personal webpage available to the public. Thank you for remembering us all. 5 Feb 2001 (Day T+164) Tommy had another good day today!! He walked even farther down the hall today than yesterday! He still has diarrhea but the frequency has slowed down a lot today. They think this is a sign that the steroids and immunosuppresnant are beginning to work to control the GVHD of his gut. They want to hold the current course for another 24 hours and see how things go before tapering off or discontinuing the steroids. Tomorrow they may try increasing the amount and/or frequency of feedings through his stomach tube. Thanks for the nice messages in Tommy's guestbook and for the many, many prayers for us!! 4 Feb 2001 (Day T+163) Tommy had a good day today!! He had good sessions with both the physical therapist and the occupational therapist. Tonight he walked from his room all the way to the secretaries desk and back using his walker. This was more than twice the distance he walked yesterday!! Also, twice today he sat up in the chair next to his bed and watched some videotapes and played with some toys. He still has diarrhea and frequent stools caused by the graft-versus-host disease (GVHD) of his gut. They are treating this with IV steroids and FK506 (immunosuppresant drug). He is on TPN (IV nutrition) and is also receiving very small feedings through his stomach tube which he is tolerating well. Please pray that the GVHD will respond to the steroids and to the FK506 and that he will not get GVHD in any other parts of his body (i.e., skin, liver, kidneys, etc...). Thanks for the many, many prayers for us and all these children and their families going through bone marrow transplant!! 3 Feb 2001 (Day T+162) Tommy had a pretty good day today. This morning and this evening he walked to the Family Lounge and back using his walker. He also sat up in the chair next to the bed a couple times and played with some toys and watched some videotapes. He is definitely gaining some strength back in his legs. He is on TPN and is also receiving very small feedings through his stomach tube which he is tolerating well. He still has diarrhea and frequent stools although they have slowed down a little. He is still getting IV steroids and an IV immunosuppresant drug (Tacrolimus, also called FK506) for his GVHD. Please pray that the steroids and the immunosuppresant drug will be effective in stopping the GVHD and the associated diarrhea. This weekend it is just Tommy and "Da-Da" as Linette went back home today so that she can work tomorrow (Sunday). She will return on Monday. Thanks for the many prayers for Tommy and the other children and their families going through this bone marrow transplant process. 2 Feb 2001 (Day T+161) HAPPY GROUNDHOG'S DAY!! Down here in NC the Raleigh groundhog said there would be no more winter, spring is on the way! I guess the other one in PA had a different idea! The past two days have proven to be a real rollercoaster ride for us. Tommy felt good on Wednesday but by yesterday it was a different story. He had fevers, lethargy and then he couldn't (or wouldn't) urinate for almost 24 hours! The bone marrow doc was talking about invasive catheters and having urology physicians see him among other stuff that was rather depressing to me. Then later in the day he told me that Tommy's colon biopsies did show the inflammatory graft-vs-host disease (GVHD). This has made them have to restart his immunosuppressive therapy medicine and add steroids. Now normally this is not a big deal but we are walking a fine tightrope here because of the Epstein-Barr virus lymphoproliferative disease. This lymphoproliferative disease (which caused swelling in his upper airway) required them to take him off the immunosuppressive drugs to help his T-cells grow so they could beat back the virus and keep the proliferating B-cell lymphocytes in check. As for his diarrhea, we were told that it could take up to two weeks after starting this therapy to see real improvement in it. The doctor also said that GVHD which is "steroid sensitive" responds more quickly and is easier to treat than if it is "steroid resistant". We hope Tommy will have the former. So, in view of the tightrope, Tommy had another CT scan of almost his entire little body today: head, neck, sinuses, lungs, abdomen, pelvis. Hopefully he will not be harmed by all this radiation he has been exposed to recently. Thank God for Tom coming back last night!! Tommy always seems to act up when one of us is gone and it is very stressful being here by oneself. I especially appreciated my friends from work showing up last evening, Sylvia and Charlotte. Even though it wasn't the best of days for visiting, it was comforting to have friends around when I really needed it! Thank you ladies so much for coming! Otherwise Tommy and I would have gotten on each other's nerves in a hurry, I'm sure. We are especially thankful to be on the bone marrow unit where our son is getting the proper attention from nurses and physicians! We are hoping to see some daylight perhaps (? discharge) by next week sometime, but every day is different and it's always a "wait and see". Tommy is tolerating his minuscule tube feedings (one ounce every 6 hours!) so far. We may have to go out on TPN until his gut recovers and he can take in more calories normally. This does not stop them from discharging you. In fact, a lot of children post-transplant go out on TPN. It's just something else to do. Thank you to the Landin's who were so thoughtful to us again! And Michelle, it is great that you came to visit with Chris and lift his spirits! You're a great person, inside and out! We also had some great news now late this evening that the blood test for detecting "copies" of the Epstein-Barr virus in Tommy's bloodstream, taken Wednesday, showed virtually zero (less than 0.1, if you want to get picky)!!! This means that the virus has been beaten back sufficiently to keep it from producing more lymphoma-like swelling in the soft-tissues and lymphnodes. This is good considering we had to put him back on immunosuppressive therapy. If the number had been quite a bit higher, Tommy would have been at an increased risk for this lymphoproliferative disease coming right back. Of course, there is still risk, but we pray it does not recur. Please continue to pray for Chris S., Jenna, Michelle, a little girl named Hunter who is in the PICU on a ventilator with fluid around her heart. Also, Max is still on the ventilator in the PICU. His Epstein-Barr disease is improving but he has developed some bleeding in one of his lungs again, thus, preventing the breathing tube from being removed. Pray for all the children here and those who have lost little ones in the process of hope. God's blessings be yours! " But you have carefully followed my doctrine, manner of life, purpose, faith, longsuffering, love, perseverance, persecutions, afflictions, which happened to me at Antioch, at Iconium, at Lystra--what persecutions I endured. And out of them all the Lord delivered me. " 2 Timothy 3: 10-11 " But the Lord stood with me and strengthened me, so that the message might be preached fully through me, and that all the Gentiles might hear. And I was delivered out of the mouth of the lion. And the Lord will deliver me from every evil work and preserve me for His heavenly kingdom. To Him be glory forever and ever. Amen!" 2 Timothy 4: 17-18. AMEN! 31 Jan 2001 (Day T+159) Hard to believe that there is already talk of groundhogs and such as we face the last day of January! Not difficult to miss out on "life" when you spend a good deal of it in the environs of a hospital. It does make one more appreciative of little things and puts a lot in perspective! I think today was a really nice day outside from what I could tell looking out our window. Ahhhh...near 70`F and "gorgeous" said Tommy's nurse! Not bad for the end of January. We never saw temps like that up in Michigan at the end of January! Far from it! Tommy's diarrhea is still an issue and he has been spiking fevers late at night. They always draw a blood culture but it never shows anything 'cuz he's on so many antibiotics! The plan tomorrow is to stop a couple of those antibiotics and see what happens. We did get the buckaroo out into the hall for the first time in six weeks today! He went a good distance and then had to sit down. This was GREAT! Luckily a physical therapist was watching us and she brought up a walker for Tommy to use (and also to save our lower backs from trying to help him). Mine is killing me tonight. Up and down on the bed, in and out of the bed, in and out of the chair! WHEW! He is still a chunk and a weak one at that! I thought he'd be pretty perky after having had a great afternoon nap, but he was puny instead, not wanting to sit up. Shortly after getting him back to bed for the night, he did spike the temp. He has been coughing up a good amount of mucus from his throat this evening and we're glad of that. Usually he likes to just swallow it or keep it in the back of his throat; and trying to suction it out is like going to war! He has also been started on small (1-2 ounce) half-strength tube feedings every 4 hours today (and a BIG thank you to Patty, the GI nurse, for getting a gastrostomy button back in! YEA!) It is difficult to know if he is nauseated sometimes from the feedings. He tells me 'yes' one time and 'no' another. So frustrating! I know he gets easily gagged on having all that mucus in the back of his throat too, so that's another variable. Tommy also had to endure being poked for a peripheral IV this evening since the one he had in finally gave out. Tom has gone back home for a couple of days. He wants to see if anyone at work will recognize him or if they've taken his desk and given it to someone else! hahahahaha!!! This has been such an incredible length of stay, that we know we'd be in major trouble (and living with you, Howard!) if our employers had not been so understanding and kindhearted through this whole transplant process (and beyond). We cannot thank them enough!! So that's the "round-up" from this pasture! Take care y'all! Keep those prayers percolatin' up to the heavens! (yes, I am getting giddy from lack of sleep)! " I will praise You, O Lord, with my whole heart; I will tell of all Your marvelous works. I will be glad and rejoice in You; I will sing praise to Your name, O Most High....The Lord also will be a refuge for the oppressed, a refuge in times of trouble. And those who know Your name will put their trust in You; For You, Lord, have not forsaken those who seek You." Psalm 9: 1,2, 9, 10. Amen! 30 Jan 2001 (Day T+158) Today Tommy had his gastroscope and his colonoscopy. They biopsied the colon only. We don't know when we'll have any results, probably in 3 or 4 days or so. We arrived in the recovery area to find that they had not replaced Tommy's gastrostomy button while he was asleep. In fact, they had unnecessarily left it out for the hour or two they were scoping him, so by the time he got to recovery they could not get the button back in his stomach because the hole had shrunk considerably. So now he has a rubber catheter hanging out where his gastrostomy button should be! We were quite angry about this and all they had to offer were excuses. We are hoping the GI nurse who usually replaces Tommy's button will show up tomorrow and get something decent in him. It may take two or three changes in button sizes before they can get the correct size for his weight back in the hole again. We also started feeding him some pedialyte in very small amounts this evening. He has only had a couple of stools since coming back from the procedure. We hope that's a good sign. The BMT doctor up here this week talked with Dr. Kurtzberg and may begin to get rid of some of the IV antibiotics he's on. He's on 3 antibiotics through his IV, one antifungal by IV and another antifungal "orally". We hope his diarrhea will soon slow down and quit. He has continued with diarrhea for almost 2 weeks now. Tommy also received another dose of the IV Rituximab (the B-cell killer) for his lymphoproliferative disease. This may continue weekly for a while yet. The GI doctors told us that this lymphoproliferative disease that caused the swelling in his upper airway could get into the GI tract and cause diarrhea. The only way they could diagnose this in the gut is by a small intestine biopsy, which they were not allowed to do today. The bone marrow docs thought he would bleed too much if they allowed that to happen. So this is disappointing. We hope this is not the cause and do not have to have the procedure repeated anytime soon. He received some platelets today for the first time since September. They had dropped to 78,000 and it was necessary to keep him at a higher level to prevent a lot of bleeding. So far, so good. Tommy right now is sitting up at the side of his bed tonight and playing with his Legos . He was also cutting paper with scissors (which he loves to do) and was also trying to draw with a pencil. I helped him spell his name. He also had to have his "Infus-a-port" reaccessed with a new needle so it wouldn't become infected. He fussed a lot at first, but with the help of some numbing cream over the skin, he did really well. Tommy really misses his grandparents! His Nana is sick again for about the 5th time this winter! Seems like the same kind of bronchitis type bug that she can just not get rid of! She really wants to see Tommy, but can't get well enough to come down!! And poor Tommy! He really wants to get out of here so he can go tear up Nana's house! As for our house, Christmas is still there, but we are still here. Someday life may have some sense of normalcy to it! We can't wait! Continue to pray for Chris S. (~ 11 yr old boy) who is feeling very depressed. He has been here about 2 years now with one complication after another. Chris has been a real trooper but now faces dialysis for a good long while and he too is wanting to just be a "normal" child who can run and play and have some fun in life. If you feel like cheering him up with some encouraging words or little gifts (he's a BIG pokemon fan), the address here would be: Chris Secord, Room 5210, Duke University Medical Center, Erwin Road, Durham, NC 27710. We are thankful for all of you who continue to follow Tommy's progress and those of the children here! God bless YOU! " Then great multitudes came to Him, having with them those who were lame, blind, mute, maimed, and many others; and they laid them down at Jesus' feet, and He healed them. So the multitude marveled when they saw the mute speaking, the maimed made whole, the lame walking, and the blind seeing; and they glorified the God of Israel. Then Jesus called His disciples to Him and said, 'I have compassion on the multitude, because they have now continued with Me three days and have nothing to eat. And I do not want to send them away hungry, lest they faint on the way.' " Matthew 15: 30-32 AMEN!
29 Jan 2001 (Day T+157) So sorry for the whiny update yesterday! It was good to ventilate, however. Today started out by Tom calling me at the hotel to say they were taking Tommy down to endoscopy this morning to look at and biopsy his bowel. He called again, as I was about to leave to go to the hospital, to give me an update and to talk with the anesthesia nurse. We had concerns about Tommy's low red blood cell counts and the probability of bleeding. It turns out they had not done any blood typing in case he needed red blood cells or platelets before, during or after the procedure. On top of that, the GI doctor who was going to do the procedure was not Tommy's usual physician and didn't have much of an idea of what was going on. Neither did the bone marrow team, for that matter. They were unaware that they had taken Tommy down for the endoscospy (a new Monday and a new physician rotating in for two weeks). So, by the time I got to the endoscopy suite, they had cancelled the procedure. We ended up back in Tommy's room on the 5100 unit (regular pediatric unit). By 2pm, however, they transferred us to room 5213 on the bone marrow unit. We are not sure how we have gotten so lucky to have been transferred over here (a gift from God! God knows we've bugged them enough to move Tommy to the bone marrow unit)! This is definitely better than being left out on the 5100 "never-never land" unit!! We had been told yesterday by one of the nurses on 5100 about their "chickenpox" case and their kids with "RSV" ( an infectious respiratory virus) up there! That made us nervous (like we really need more to be 'nervous' about)! In fact, they wanted to take Tommy out of his "isolation room" to put the chickenpox case in there. We-e-e-l-l-l-l-l, that went over like a lead balloon, (Mama and Daddy had a different opinion about that) and, fortunately for Tommy, they were able to move another person, who didn't need an isolation room, around instead. The latest plan about the endoscopy that we've heard is they will take Tommy down tomorrow, but I wouldn't say it's written in stone anywhere! Once we arrived on the bone marrow unit this afternoon they gave Tommy his first red blood cell transfusion since September 7, 2000. His counts had been normal prior to him getting sick this December and he has not needed any red cells or platelets since his last transplant in August 2000. However, his red cell count has not been able to keep up with all the blood they've been taking from him for daily and twice daily lab work. And most post transplant children who need an endoscopy and biopsy of their bowels tend to bleed a lot, so going into this procedure with a low hemoglobin level is not a good idea. Thanks for all the many prayers for Tommy. Please pray for Max who is in the PICU on a ventilator due to upper airway swelling (same thing Tommy had). They are going to try to remove his breathing tube tomorrow. Pray that this will go well and that they will not have to re-intubate him. Also, pray for all the children and their families that are going through this long and difficult bone marrow transplant process. 28 Jan 2001 (Day T+156) This is the beginning of the sixth week in the hospital for Tommy! The days just get longer and the diarrhea has not stopped. It has decreased just slightly, but not much. Dr. Treem, Tommy's GI doctor, will do a gastroscopy and perhaps a colonoscopy as well this week. We had hoped it would be tomorrow, but now I hear rumors of Wednesday. Tom has been wanting to get back to work, but he wants to be here for this procedure and if it's in the middle of the week, that just messes things up again. These people have no sense of urgency as we do. We want to get this stuff over with, find out what the results are and get out of here! The sooner we get out of here, the sooner we get to go HOME! Most of the time we have spent here has been "waiting". Waiting for the swelling in his airway to get better, waiting for the breathing tube to come out, waiting for the fevers to go away, waiting for the diarrhea to stop, waiting for some doctor to come around....waiting, waiting, waiting! And forget anything ever happening on the weekends! Good grief! I can't believe insurance companies pay for all of this "waiting". Guess they don't have a choice either! So you can tell how much "patience" I've accumulated over all of these years!! If you have never had the "privilege" to sleep on one of these chairs that converts to something to "sleep" on, then by all means, you need to have the experience! Despite all of our grumbling, Tommy has had a good day. He's been up in the chair for several hours today and taken a few steps around the room. He still has very little strength in his legs. These physical therapists are always promising us that they'll come around before mid-afternoon when Tommy is too tired to do anything, but they never show. Or they'll come by when he's passed out in bed already at 4pm! I don't think they've seen him more than 3 or 4 times and actually did anything with him! Well, got to go change another diaper! Thanks for listening and praying. We need it! 26 Jan 2001 (Day T+154) Tommy had another good day today. He still has the diarrhea and they are still holding his tube feedings but the TPN is helping him get his strength back. He worked very hard with the physical therapist today. He was able to stand briefly and take a couple steps with support. He sat in the chair next to the bed a couple times today and played with his toys and watched some videotapes. His oxygen saturations continue to be good on room air. He does wear a humidified mask at night while he sleeps to keep his mouth and nasal passages from drying out. His white cell count today was much better, 19.6 k/ul (down from 31.5 k/ul yesterday). His hemoglobin level was 8.4 g/dl and his platelet count was 117,000. Please pray for these doctors to be able to determine what is causing Tommy's GI problems. Also, please continue to pray for Max, Jenna, Jasmine, Chris S., Michelle, Alex W., Alex M., Amir, Stephen, Thomas, Jordan, and all the many children going through this bone marrow transplant process. Many thanks for your love and prayers!! 25 Jan 2001 (Day T+153) Tommy had a much better day today. What a difference a day does make! The IV fluids and the TPN (IV food in a bag) have done wonders for him. He has gained back 3 pounds since yesterday and looks much better. However, he still has diarrhea and has to be changed every two to three hours. They are still holding his stomach tube feedings. His fevers have been low grade ~ 99-100`F. They will decide this weekend whether or not to do a colonoscopy. Tommy slept well last night and was awake all day playing with his toys and watching his videotapes; shades of the "normal" Tommy!! We are still not sure why his white blood cell count is still so high (31 k/ul) today. Pray that this lymphoproliferative disease is not returning and that his white count will return to normal. Please pray for these doctors to be able to determine what is causing Tommy's GI problems. Continue to pray for Max and his family. He is still on the ventilator in the PICU, waiting for the swelling around his airway to go down, just like with Tommy. Also, please remember Jenna, Jasmine, Chris S., Michelle, Alex W., Alex M., Amir, Stephen, Thomas, Jordan, and all the children of transplant, of whom there are too many! God bless YOU! 24 Jan 2001 (Day T+152) 11:00pm: Where to start?? Tommy had a bad night and not a terribly good day. Description of what he looked like this morning (Wednesday) could only be likened to that of a holocaust survivor; sunken eyes, black circles under both eyes, extremely pale, listless, that "starving children" look you see on those charity commercials for donations. It was very scary to see him like this. The problem was that he was becoming increasingly dehydrated as they held his tube feedings during the night and did not increase his IV fluid intake. He has had very little caloric intake for the past 6 days. This morning they brought the scale in: a loss of about 7 pounds! The bone marrow "attending physician" told us we were "over-reacting"!!! Haha! Betcha he wouldn't be saying that if this was HIS child laying in that bed for 5 weeks looking like Tommy did this morning! In fact, I can guarantee you those words wouldn't even come out of his mouth if it were his child! Anyway, after we finished "over-reacting", the GI (gastrointestinal) doctor came in to see Tommy. He was very concerned about the swelling in the pelvic area. That made Tom and I worry some more! This afternoon, Tommy went to CT scan for views of his pelvis and abdomen. Thankfully, it was good news! No lymphoma, no bowel obstruction, just liquid in the intestines (diarrhea waiting to happen or that's where all his extra body fluid is getting sucked in to). So, tonight, more IV fluids going in, TPN (total parental nutrition, i.e., IV food with calories) to be started tonight, a change in antibiotics, another new IV started in his arm and maybe a colonoscopy sometime in the next few days. The doctors are concerned that he could have GVHD (graft-vs-host disease) of his gut, but only a biopsy of the intestines would tell definitively. They could also biopsy for other viruses or bacteria that might be causing such a mess with Tommy's gut. Another reason we were upset this morning was because his white blood cell count jumped from 19.7 k/ul yesterday to 38.7 k/ul today! Dr. Kurtzberg finally explained to us that this jump in white cell count could be a stress response to his dehydration. His fevers have been non-existent to low grade ~ 99`F. All we needed today was a doctor to be patient enough with us to answer questions and get the ball rolling on making him better. That's why we appreciate Dr. Kurtzberg so much. She has great patience with us and discusses issues going on with Tommy with us. A couple of these other bone marrow physicians don't listen (they just think you're "anxious"!), don't pay close attention to what or how the child is acting, and just want to hurry up and get on to their next patient. Thus, the brush off and the pat little answers with a smile to make you feel "better". Well, I can tell you that after THREE transplants, Epstein-Barr Virus Lymphoproliferative Disease (EBVLD), 3 weeks on a ventilator in the PICU, high fevers and diarrhea, etc, etc, (you get the picture), we are not going to be brushed aside like insignificant idiots. Tommy is looking a lot better tonight as a result of all the IV fluids they have pumped into him today. All the blood and stool cultures done since the diarrhea started last week have come back negative. Please pray that Tommy does not have GVHD in his gut and that the doctors can determine what is causing his GI problems (diarrhea, malabsorption, etc.). Also pray that the swelling will continue to decrease in his upper airway and that this Epstein Barr Virus does not cause his lymphocytes to start proliferating again. 12:15am (24 Jan): Okay, you know the old adage: one step forward, two steps back, well, that's where we are at in the wee hours of this morning. We noticed a large amount of swelling down around Tommy's private area tonight (Tuesday). At first I was terrified that this was the lymphoma returning, it felt lumpy. I must say I did get everybody from bone marrow over here, including Sue and Dr. Kurtzberg who were over at clinic (pushed the panic button, so to speak!). Their assessment of it was that it wasn't lymphnodal swelling, but swelling in the soft tissue. No one knows why. We had noticed this maybe within the past day or so and I didn't really pay much attention to it until tonight when the swelling was HUGE. And now, since 6pm he has not been absorbing his small amounts of half-strength tube feedings. He is only getting 3 ounces every 3 hours. We were also wondering if he is absorbing his medications given through his stomach tube because he was so restless tonight (?valium withdrawal), but he has finally dozed off. Now at midnight he still hasn't moved this small volume of food out of his stomach, so they wanted to do an abdominal x-ray to rule out something called an "ileus" or blockage of the intestines. We were told by his nurse that the x-ray looked "okay", maybe "not totally normal, but okay". What is that supposed to mean? Anyway, I called the bone marrow fellow and he told me the x-ray was normal, showed some air in the intestine, which is typical, and he wanted a baseline x-ray in case Tommy started to show more GI symptoms. I can say that this has been a very stressful evening for us. What's more is this nurse Tommy has tonight doesn't seem to have a "clue" about anything. Where did they dig this one up from?? Guess it'll be a long "night duty" shift for me tonight. Things always have a way of happening when it's MY turn to stay at night. It's not quite fair!!! (WAHHHHH!!). Please say your prayers for Tommy today and the nursing staff here because the care is pretty sparse out here on this floor. Many thanks. 22 Jan 2001 (Day T+150) Tommy is continuing to slowly improve. Today they started him on some Pedialyte (clear liquid electrolyte solution) through his stomach feeding tube. Tomorrow they will begin small feedings of PediaSure starting at 50% strength and see how well he tolerates it. They have repeated the C-Diff culture and some other cultures of his stools but we have not received any results yet. Tommy sat up in the chair next to the bed a couple times today and played with some toys and watched some videotapes. He is still very limp and weak and gets tired quickly. He received some physical therapy today. His legs are still too weak to support his weight. He is breathing mostly through his nose which indicates that the swelling has gone down some in his upper airway. They did not do a repeat CT scan today. They want to wait a few more days, maybe a week, before doing another one. He stills wears a humidified mask when he sleeps but he no longer has supplemental oxygen added to it. His oxygen saturations have been good on room air. Tom Eudailey from the Durham Church of Christ came to stay with Tommy for a few hours this evening so that we could go to the home of Jerry and Linda Pence for a wonderful home cooked meal!! Thanks for the many prayers for Tommy and the other children going through this difficult bone marrow transplant process. 20 Jan 2001 (Day T+148) Tommy is looking a little better today and we finally have a new President!! (YIPPEE!!!)!!! We were able to get Tommy to sit up in a chair next to the bed a couple times today. This is the first time he has been out of bed in three days! He is still very limp and weak and gets tired quickly. He cannot stand on his legs at all. We have a lot of work to do to get him physically back to normal. His temps have been low-grade, 99-100`F. Tom told me today that we have spent more time in the hospital with this complication of transplant than we did for the entire third transplant process itself! That's incredible! We are definitely tired of being here and would like to get back home, but that will still be a while. Tommy has not been fed since Thursday, so we are going to ask about starting some clear liquids tomorrow. His diarrhea has slowed down, but he still has liquid stools fairly frequently. He is still on 3 IV antibiotics, another one through his stomach tube, and another of his antifungal medicines has been switched to IV form now as well. The real test will be when they start to take him off some of these antibiotics (whenever that will be!). Hopefully he will not get re-infected with anything. Tommy is also being weaned off of the valium he was on since being in PICU on the ventilator. This is a slow process, but it would cause withdrawal if done too quickly. Of course, y'all know how patient a person I am!!! hahahaha!!!! Thankfully they stopped giving him IV Benadryl every 8 hours before his IV Vancomycin. On top of that he was getting valium every 8 hours and oral methadone every 12 hours. He was so stuporous Thursday night that I made the resident come look at him. He was getting benadryl before the vancomycin because he gets red in the face from this antibiotic. Luckily he has been getting only a little bit flushed in the face without the benadryl and they are running it over 2 hours instead of over 1 hour. Needless to say, he has been much more awake since they have decreased these sedating drugs. His poor little bottom has also suffered from all the diarrhea. Now he has a Candida (yeast) rash on it and it bothers him so! Good news is that he is breathing mostly through his nose these days and does not make any stridorous noises when doing so. We make him wear his humidified oxygen mask when he falls asleep, to keep his mucous membranes moist and his oxygen saturations at an optimum level. Once in a while his oxygen saturations will drop to less than 90%, but it usually has to do with his head being in an odd position or needing to cough, stuff like that. It doesn't stay down for long. I think they will do another CT scan early next week and it will probably show even more improvement. I want to thank Donna, Helen, and Lou for coming down to see me last week (friends from work)! That was the last time Tommy looked so good and I'm glad you got to see him like that instead of like a wet dish rag! Thank you for dinner and for being so good to me! It was great! Please continue in your prayers for Max, Jenna, Chris S., Michelle, Alex W., Alex M., Maddy, Jasmine, Thomas, Jordan, Stephen and all of our transplant friends, those whom we know and those whom we haven't met. Many thanks for your love! 19 Jan 2001 (Day T+147) Tommy is looking a little better today. He was awake a little more today although he is still very limp and weak and wants to sleep a lot. His temperatures today have been around 99 to 100 degrees F. He still has watery diarrhea but they are occurring less frequently. They are still holding his feedings. They did increase his intravenous (IV) fluids today to keep him better hydrated. All the blood cultures have come back negative. The C-Diff culture also came back negative. Thus, they still do not know exactly what is causing the diarrhea. They suspect C-Diff since the Flagyl (an antibiotic to fight C-Diff) seems to be helping. They may repeat the C-Diff culture or do some other cultures of his stools tomorrow. He is continuing to do less "mouth breathing" which is a good sign. He still wears the humidified mask to keep his throat and nasal passages from drying out. Thanks for the many prayers for Tommy and the other children going through this bone marrow transplant process. 18 Jan 2001 (Day T+146) Last night was a long, tiring, sleepless night. Tommy had a high fever and watery diarrhea all night long. We went through about twenty diaper changes over an eight hour period. This morning they stopped his feedings which in turn slowed down the stools. He is still having very watery stools. He is now getting hydration by increased intravenous (IV) fluids. They have taken cultures of his blood and stools to determine what is causing his fevers and diarrhea. We have not yet received any preliminary results from these cultures. They think Tommy may have C-Diff (Clostridium Difficile) and they have started him on Flagyl. C-Diff is a bacteria that many individuals have in their digestive tract and which usually does not cause problems. However, when you have been on antibiotics for a long time this bacteria can cause terrible diarrhea and fevers. This afternoon his fever came down significantly and has remained low grade so far. He still has diarrhea but the frequency is much less. This has totally wiped him out and he has slept all day. He is like a little rag doll, completely limp. He still wears the humidified mask to keep his throat and nasal passages from drying out. He is doing less "mouth breathing" today which probably means the swelling in the nasal area is going down some. The Pence's from the Durham Church of Christ came up this evening to watch Tommy for us so that we could go out to a restaurant for dinner. Please pray that Tommy's fever and diarrhea will end and that the swelling in his upper airway continues to go down. Also please continue to pray for Max, Jenna, Chris S. and the many other bone marrow transplant children and their families. We are grateful for your support. 17 Jan 2001 (Day T+145) We-e-l-l-l-l-l-l.........things were going good, until this evening. We had gotten moved off the stepdown unit to a regular pediatric floor, room 5131. Tommy was not himself this afternoon. Tired, not wanting to sit up in the chair and play, like usual. Then the fever began. He's up to 104`F. tonight. He's lethargic and not coughing well. He threw up a couple of times because we suctioned his mouth out and stimulated his gag reflex. Don't know if anything from his stomach went down into his lungs from that. We hope not. His fever is still high, his lungs sound junky, he's lethargic, pale, his heart rate is 180 beats/minute right now. Now he has started with some watery diarrhea (can you say Clostridium Difficile?). We are worried about our buckaroo and now we're stuck on this unit that doesn't have a good nurse-patient ratio (5 patients to 1 nurse). It will be one of those sleepless nights. They have done a chest x-ray and some labwork. The bone marrow physician is supposed to come over to see him, but they have someone very sick on the bone marrow unit, so it may not be until morning. In the mean-time the bone marrow resident stopped by to take a look at Tommy. (SIGH). Kay, I really could use talking to you right now!!! We probably are both closer to being bald today! Please pray for us! 16 Jan 2001 (Day T+144) We received some good news today!!! The results from a CT scan done this morning indicate significant reduction in the swelling in Tommy's upper airway. They say his airway opening is now about 50% of normal. Most of the current swelling is in the area at the rear of his nose. He is still "mouth breathing" but the humidified oxygen mask is working well to keep his mouth and throat from drying out. His oxygen saturations are great while he is awake even without supplemental oxygen being added to his humidified mask. However, when he is sleeping he does requires some oxygen to his mask in order to keep his oxygen saturations from dropping below 90%. Today's CT scan results confirm that things are moving in the right direction. Assuming that the swelling continues to go down, he will be in the hospital for about 1 or 2 more weeks. Once discharged from the hospital they will probably require us to stay in Durham for a few days for clinic followup before we can take Tommy back home to Virginia. Tommy had a good day today. He had lots of visitors today: his speech therapist, physical therapist, hospital school teacher, some of Linette's co-workers from Richmond, nurse Mary Townley from the bone marrow transplant unit, Mr. Pence and Mr. Eudailey from the Durham Church of Christ, Dr. Kurtzberg and other doctors and nurses. Tommy sat up in a chair next to his bed and watch some of his videotapes this afternoon. His leg muscles are still too weak to support his weight while standing but he is getting a little stronger each day. Tommy's blood counts today were: hemoglobin 8.7 g/dl, white cell count 10.9 k/ul, and platelets 116,000. These are good counts considering all he has been through the last month. Thanks for the many, many prayers for Tommy. Also, please continue to pray for Max, Jenna, Chris S. and all the children going through this long and very difficult bone marrow transplant process. 15 Jan 2001 (Day T+143) Last night was a rough night. Tom stayed with Tommy and didn't get much of what is called "sleep". Tommy was dropping his oxygen saturations when he fell asleep and his mouth was very dry, making the mucus in his mouth and throat pretty sticky and difficult for him to clear. Finally, in the early morning hours some respiratory therapist suggested a humidified oxygen mask. Well! Hallelujah! It has done wonders for the rest of the day. Tommy slept well for his nap. I only had to rouse him a couple of times to get him to cough and clear secretions from his throat. His oxygen saturations are great while he's awake, 95-99%. Sometimes they dip into the mid to high 80s while he's asleep, which is not acceptable. Normal is usually greater than 90-92%. The humidity has also made it easier for him to clear the mucus from his throat. I get night duty tonight, so it'll be interesting. Tommy did get up into the chair twice today. His legs are like jello, absolutely no strength in them. We will also have to wait until tomorrow for his CT scan to get done, maybe. I am encouraged by Tommy trying to say some words. He is pretty hoarse when trying to speak, but this is great that he is even trying! Please continue to pray for a child named Max, who is early on in transplant and is in the PICU with the same problem Tommy is having, airway obstruction caused by the Epstein-Barr virus. He is still on a ventilator but has made some progress. Tommy's blood counts are holding their own, even with them taking blood from him everyday. By this, we know that his marrow is still working, producing the new cells his body needs. Pray also for Jenna, who is fighting a virus again. Pray for all the "soldiers" of transplant who fight for their lives each day and for those who have given it their all and their parents as well. God's blessings be yours each day! 14 Jan 2001 (Day T+142) 9:00 pm Well, we have made it out of the PICU (Pediatric Intensive Care Unit) and are on the "stepdown" unit in room 5306. We did not get out of PICU until late in the afternoon. Tommy has done pretty well without the breathing tube, although he has a lot of thick secretions and sometimes does not want to cough them out, which can compromise (obstruct) his airway. He still has swelling in his upper airway and has to work harder than normal to breath. For example, today while sleeping his respiratory rate was 28 breaths per minute compared to 14 breaths per minute when he was intubated and on the ventilator. Tommy is supposed to have a CT scan again either tomorrow or Tuesday; we are not sure when it will happen because of the holiday tomorrow. We are getting tired of being on hold for all of these "holidays". We have had to wait around for the past 3 out of the last 4 weekends because of Monday "holidays". Doesn't anybody know that sick people in hospitals still need attention on "holidays"???? Guess not. In spite of all that, we are grateful to God for Tommy being one step closer to getting out of the hospital. We are not sure how long we will have to stay in the hospital; it all depends on our little (but getting bigger) buckaroo! 11:00 am Hi all! Just a quick note for now, more to follow later. Tommy extubated himself (i.e., forcefully coughed out his breathing tube) yesterday morning (Saturday) and they did not reinsert it. They watched him to see how well he could do without it. He has done well over the past 24 hours except for coughing up a lot of thick mucus. He is still primarily breathing through his mouth and not his nose. We got a phone call from the PICU staff this morning that they were going to transfer him out to another unit. Needless to say, things have been very hectic this morning, so we will update more later. Praise God!! Keep those prayers going! Many thanks! 11 Jan 2001 (Day T+139) Tommy received another CT scan of his head and throat this morning and the results were the same as Tuesday's scan (9 Jan). They said that the swelling in his upper airway caused by the radiation treatment should "peak" around 3 to 5 days after the last day of treatment and then begin to decrease. Today was the 6th day since receiving radiation and thus it is not that unusual that there would still be a lot of swelling. They will perform the next CT scan on Monday (15 Jan) to check the progress. Tommy had a pretty good day today. He cooperated very well with the CT scan. He received some physical therapy, played with some toys and watched some video tapes. He is tolerating the breathing tube well but is getting tired of it all, especially the suctioning and being layed up in bed for so many days. Please continue to pray that the swelling will go down so that they can extubate him (i.e., remove the breathing tube which is connected to a ventilator). Also, please pray for a boy named Max and his family. He was recently transferred from the bone marrow transplant unit to the PICU due to upper airway swelling caused by lymphocyte proliferation from the Epstein Barr virus. 09 Jan 2001 (Day T+137) We received some good news today!!! The results from the CT scan indicate that the radiation treatment that Tommy received is working to kill these lymphocytes (B-cells) that are proliferating in his upper airway (i.e., lymph nodes, adenoids, tonsils, tongue, etc.). However, there is still swelling in these areas of his throat and they cannot extubate him until this resolves. The radiation treatment itself is causing swelling of these tissues along with the swelling that is caused by the proliferating lymphocytes. They are not sure how long it will take for this swelling to go down but are indicating it would probably take at least a week, maybe longer. For now there are no plans to do more radiation. They will repeat the CT scan this Thursday to determine the progress being made. Tommy had a good day today!! He was awake and alert for a good part of the day and watched some of his videotapes and played with some toys. With the "light sedation" they are giving him he is able to move his arms and hands pretty well. He is unable to move his head or upper body. He can with assistance move his legs a little. He does not like the breathing tube but he is being very good about not touching or pulling on it. Thanks for the many continuous prayers for Tommy. It really helps knowing that there are so many people praying for him. A special thanks to Cecilia and her family for their generous and caring hearts. 08 Jan 2001 (Day T+136) "Therefore submit to God. Resist the devil and he will flee from you. Draw near to God and He will draw near to you....Humble yourselves in the sight of the Lord, and He will lift you up." James 4:7, 8, 10. Today it rained in Durham. I could see the storm clouds through Tommy's window give way to blue sky and even some sunshine making its way past the clouds. It was a fitting analogy to what we have been going through the past two weeks with Tommy stuck on this ventilator, but also our hope for better things to come. It's getting more difficult to leave him at night when he's very awake. He starts to cry and doesn't want to let go of our hands. Some staff take a whole lot better care of him than others and it is difficult to contend with that. I am just wanting to get him out of the PICU so we can take care of him like we know how and how he is accustomed to being taken care of. Yeah, we dote on him, but he has a lot of special needs and no one can do it as good as mom and dad. And no one understands why more than mom and dad. Anyway, enough of that for now. Tommy did not get to CT scan until about 6:30 or 7 pm. He did well, thanks to IV sedation which made him sleepy enough to keep still! We won't know any results until sometime tomorrow. He is scheduled for another round of radiation therapy tomorrow if there is still no decrease in the swelling on this scan. We are hopeful. We cannot wait for Tommy to get this tube out of his throat. He has been so good about it, but it is becoming bothersome and we want OUT! OUT of the PICU! OUT of the hospital!!! WE WANT TO GO HOME!!!!! Tommy's blood counts are taking a hit after having so much blood drawn everyday, his poor bone marrow is working hard, but can't keep up. His hemoglobin has dropped to the low 7.0 g/dl range, his platelets are now hanging around 118,000. His white count is down to around 14 k/ul from 36 k/ul at it's peak during all of this. Tommy will most likely need a red blood cell transfusion at some point in time here. His marrow is functioning well, but it is too young to have had much time to make a healthy reserve. Chris S. got out of the PICU onto the bone marrow unit today. Unfortunately there was another child from the bone marrow unit transferred to the PICU. As it is with all children of God, tomorrow is another hopeful day! Pray with us for all of God's children! " Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, who are kept by the power of God through faith for salvation ready to be revealed in the last time. In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, whom having not seen you love." 1 Peter 1: 3-8a. Amen! 06 Jan 2001 (Day T+134) Tommy continues to amaze the PICU (Pediatric Intensive Care Unit) staff by being awake, cooperative, sometimes bossy, and at the same time tolerating, as best he can, being connected to a ventilator. He is truly an amazingly strong, tolerant child. God is truly working through him to teach us a lot of things. He was watching TV videos today with great amusement. He wears us out just watching all of his hand waving and signalling as he tries to imitate what the characters are doing. After about 3 or 4 hours of this, however, he wears himself out. We are grateful that he is doing so well for what he has to endure. Tommy continues to receive sedation through his PEG (stomach) tube and occasionally through his IV line. His is off continuous IV sedation. We are greatly hoping the CT scan scheduled |
