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History
13 Aug 00 (Day T+248) Well we did it! We took Tommy to a matinee of "Thomas and the Magic Railroad"!!!! The theater was quite empty, just as we were hoping, only 3 other families. Tommy had no problem sitting/standing through the whole thing. It was fun for him, but the story line was rather tough to follow, even for avid tank engine fans. They could have done a much better job with this story. The potential was there and they didn't use it. He did not want to leave, however, and was quite disappointed that he couldn't "rewind" and start it over! hahahahaha... This past Friday at clinic Tommy received platelets as his level was only 12,000. He also had a "pulmonary function test (PFT)" and an echocardiogram of his heart done. Unfortunately the PFT came before the echo. Basically, with this test, we have to shove a plastic mask over his face and let him cry into it. He is absolutely uncooperative with this thing, no matter how many times he's done this. Can't say I blame him for being so skiddish. He is a very strong child, physically, and gave Nana a good kick in the leg while thrashing wildly around. I dread this test every time they require it. After he calmed down, we were corralled right down the hall for the echo. Tommy has done well with echocardiograms before and after a bit of boo-hooing, we were victorious in completing our day! One of the shortest visits ever, thanks to Sue, our nurse practitioner, for being there Friday and having Tommy's platelets ready to go by the time we arrived! Please pray that Tommy does not get sick from having been out to the theater! I was so paranoid that I washed his hands with antibacterial soap several times. Dr. Kurtzberg said it was O.K. for us to take him to a movie provided we went to a non-crowded matinee and were careful. It was a great treat for him, but also a great risk just prior to going into transplant. It is so easy for these children to get infected with any kind of virus or bacteria that you or I would have no problem fending off. Please continue to keep Jenna Sailsbury in your prayers. She has had a terrible couple of days lately with return of high fevers, unstable blood pressures, both dangerously high and low, vomiting, etc. They did manage to get her stable through the night to take her to OR and remove her central IV lines. Her website is www.caringbridge.com/page/jennaswebsite . Many thanks for your love and support. "Here we go again." It is like a bad, recurring dream, all of this transplant stuff. Pray also for my sanity tomorrow and Tuesday as I need to pack up the house again; not an easy task. Our love to all. "Seek the Lord while He may be found, Call upon Him while He is near. Let the wicked forsake his way, and the unrighteous man his thoughts; Let him return to the Lord and He will have mercy on him; And to our God, for He will abundantly pardon. 'For My thoughts are not your thoughts, Nor are your ways My ways,' says the Lord. 'For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts.' " Psalm 55: 6-9 "God is our refuge and strength, A very present help in trouble. Therefore we will not fear, though the earth be removed, and though the mountains be carried into the midst of the sea; The Lord of hosts is with us; the God of Jacob is our refuge." Psalm 46: 1,2,7. AMEN! 8 Aug 00 (Day T+243) We would like to commend Jenna Sailsbury and her family to your prayers today. Jenna apparently developed a high fever, 104, and as far as we know, was supposed to have been taken by Duke's Medflight from a VA hospital back to Duke University Children's Medical Center sometime this afternoon/evening. By the time we had left from our clinic visit today, which was around 6:30pm, we had not seen a helicopter land. The children's clinic overlooks the hospital's helicopter landing pads, so we have every opportunity to watch them come in and out. Jenna is a very special girl with a very special family. They are dear to our hearts. Jenna had just celebrated her one year anniversary post-transplant!!! Jenna and her family continue to overcome the obstacles that are still prevalent even at this date after transplant. Please pray fervently to the Lord for them.....Our clinic visit today was quite long. Tommy had to get both platelets and red blood cells. On top of that, big Tom (daddy) had to go to another building to have a physical by an adult bone marrow physician to get a "healthy" report prior to him being able to donate his bone marrow to Tommy. I just happened to have a nasty headache coming on, stopped at a nearby pharmacy, and drugged myself on one little "advil migraine" tablet! It made me very woozy and sleepy. Tommy, I think, was the real "babysitter"!! Anyway, we have received our schedule of treatment plans for the next couple of weeks. Tom will have to be put under general anesthesia to have his bone marrow harvested (i.e., siphoned out!) on the 24th. Tommy will undergo a week of chemotherapy starting on 8/17 to 8/23. Have a radiation treatment on 8/24 and be transplanted 8/25. Can you say "hectic"??? Nothing new in that regard to our usual everyday lives! We cannot believe we have come full circle on another year and we are still struggling with this thing called transplant. Last year on August 2nd we began our journey to Duke for 6 weeks of outpatient workup, then the first transplant, which did not engraft. After being home a week during thanksgiving of that year, we left again for Duke to try transplant again while Tommy's immune system was at a very low level. Needless to say when we heard those joyous words of "we have donor cells" we did not think they would be destroyed shortly thereafter. So, now here we are again, wondering what the future holds for our family. To look at Tommy, you would not consider him to be a "sickly" child. He cannot do a lot of things most children are able to physically, but his personality makes up for a lot of what he misses otherwise. He is our joy. Thank you Lord for Tommy. He teaches us what blessings are really all about. "For whatever is born of God overcomes the world. And this is the victory that has overcome the world--our faith." 1 John 5: 4 AMEN! 4 Aug 00 (Day T+239) Today was another clinic visit and platelet transfusion for Tommy. His platelet count was in the 40,000-range and they are wanting to keep it there or higher to help his body to heal properly and recover from all the surgery and dilations he's been through recently. Tommy is a bundle of energy lately and is spinning and dancing to the latest in Barney video. We have not gotten to see the "Thomas and the Magic Railroad" movie; haven't even had time to find out where or if it is showing around here. Each day is filled with too much to do and too little time to do it in. This summer has been a big blur. We haven't been outside much at all. The days are just blurring together. One is as unrecognizable as the other. Some days I think I'm in early Alzheimer's because I can't think straight or remember what I was doing, what day it is, etc. It's pretty pathetic. I get to feeling a whole lot selfish just wanting some time for myself or for Tom or for me AND Tom together. But there is not time for that now. It's Tommy that we're here for. I feel guilty at work. Everybody is working very hard, putting in a lot of extra hours, consistently, and here I am, hardly able to work my 32 hours a pay period! And now I need time off again! What a joke! If anybody ever mentions the word "transplant", think "long-haul!" It is not something that will be over with in a week or two, a month, not even six months, perhaps not even a year. It is going to be something to have to deal with for the rest of your lives and it is a life-altering experience of great proportion. I wish I could write a book and get thoughts from these kids and their parents that have been through this stuff. What telling stories they would have. Even then, you wouldn't really understand it, unless you've experienced it for yourself, up close and personal! The isolation and feelings of loneliness are almost desperate at times, but almost always, you find that little reserve of courage, that strength from our Source above to face another day, another hour, more madness.....Well, consider yourself the shoulder I just "cried" upon! Thanks for letting me vent! We did see Dr. Kurtzberg this day as well and she answered a good many questions about this transplant for us. Tom has to start taking iron tablets and will have to go to the Red Cross to donate a unit of his blood for his own use after they harvest the bone marrow from him. We will have to travel to Durham on 8/15. Tommy will be admitted on 8/16 and have an appointment with a radiation oncologist that day. He will start IV chemotherapy on 8/17 consisting of Fludarabine for 5 days, then Cytoxan for the next 2 days, along with ATG. A single "low-dose" radiation of his thoracic lymphnodes will be done on 8/24 (Tom gets his marrow harvested on this day also). The transplant day will be 8/25, if all goes well. Pray for Tommy that he will tolerate all these drugs/radiation well and that he will not develop any life-threatening acute or chronic complications that could affect his skin, liver, lungs, gut, kidneys, or any other organ. He will be highly susceptible to any viral or bacterial infections for months, because of the loss of his own T-cells that function to protect from infection. Dr. Kurtzberg said donor T-cells would not begin to recover even minimal immune function until about 5 or 6 months out from transplant! We can just be thankful that we are totally embraced in God's most competent, omnipotent, all-encompassing hands! Otherwise, we have no hope. And without hope, their is no faith. Thanks for your unending prayers! God bless you abundantly!!! "The person who trusts the Lord will be blessed." Jeremiah 17: 7 AMEN! 1 Aug 00 (Day T+236) Tommy is continuing to recover well from his splenectomy. He was seen by Dr. Kurtzberg in clinic today. His platelet count had dropped 45,000. They gave him a platelet transfusion today in order to keep his platelet count above 50,000 while he is recovering from his surgery. We will be returning home to Virginia tomorrow and will come back on Friday to get another platelet transfusion and to have a detailed consultation with Dr. Kurtzberg about the third transplant. The current plan is to admit Tommy to the Pediatric Bone Marrow Transplant Unit on Wed, 16 Aug, begin chemotherapy the following day, harvest Tom's bone marrow on 24 Aug, T-cell deplete it and transplant it to Tommy on 25 Aug. Please continue to pray for Tommy and all these strong and courageous children going through this transplant process. 31 July 00 (Day T+235) Tommy was discharged. He has been started on an antibiotic to prevent any pneumococcal infections he could get from not having a spleen. This will continue indefinitely for years (supposedly). His diarrhea is much less today. We will go to clinic tomorrow and find out when we can go home to VA. Tommy is feeling better today but still has some pain from his surgery. He is walking more today. His platelet count continues to drop, today it was 97,000. Thanks for all the many prayers for us!! 30 July 00 (Day T+234) Tommy is continuing to recover well from his splenectomy. He still has some pain from the surgery but was able to walk in the hallway four times today!! However, today he started having some diarrhea. They think it is from the penicillin he has been getting. So, they have discontinued the penicillin and will start him on another antibiotic tomorrow which hopefully will not cause him diarrhea. As a precaution they are doing a culture of his stool. Tommy's platelet count is dropping quickly. Today it was down to 157,000 . They are planning to discharge Tommy tomorrow and have us stay in Durham through at least his clinic visit on Tuesday. Please continue to pray for Tommy and all the children who are going through this long and difficult transplant process. 29 July 00 (Day T+233) Tommy is feeling better but still has pain from his surgery. He sat in the chair for a good portion of the day watching his videotapes and walked a complete lap in the hallway twice today despite the pain!! We are very proud of him!!! They have switched his pain medicine from IV morphine to tylenol with codine. His platelet count is still good but has dropped to 256,000. Thanks for all the many prayers for us. 28 July 00 (Day T+232) 9:30pm: Tommy is sitting up in the chair in Daddy's lap right now, watching some "Little Bear" on TV. Tommy sat/reclined in the chair the whole afternoon until about 6 or 7pm. He finally opened his eyes around 6pm tonight! They have switched his pain med from IV Fentanyl to IV Morphine which is lasting longer and keeping him more comfortable. He has even said a few words to us this evening. After resting in bed for a brief period, we got him up out of bed around 8:30pm to take him for a walk in the hall. He walked the entire length of the hall from his room (2) to 16 and back. He was comfortable and did well! His IV fluids have been cut back and he is holding down his tube feedings. If he continues to progress well, perhaps we only have another couple of days in the hospital. I'm sure we will have to stay a few days in Durham to keep an eye on his blood counts. His platelet count this afternoon was still 313,000! It will be interesting to see how his count fares over time. I'm sure it will drop to low levels again, but maybe not quite so low as in the past. Thanks for your continued prayers for us. Good afternoon everyone! Tommy had a painful night and did get a good amount of pain medicine. He is now sitting up in the chair, but is asleep. He tolerated 6 ounces of clear liquids in his feeding tube this morning. We will try his pediasure feeding this afternoon. His blood counts are all very good this morning: Platelets 326,000 (!), hemoglobin 10.8 g/dl, white blood count 12.5 k/ul. He will have to eventually get out into the hall to walk. Wish us luck! I know it will get easier each time he moves around, but it is difficult for him to comprehend all of this. He is being a very brave boy. Thanks for all of your prayers for our buckaroo! 27 July 00 (Day T+231) 10:15pm: Hi all! Tommy went down to the OR about 6pm tonight and surgery for his splenectomy took about an hour. He was out of the OR by 7:45pm and back in his room shortly thereafter. The surgeon told us things went well for Tommy during the surgery and his spleen was slightly larger than normal for a child his age. Post-operatively his platelet count was 225,000. He is still on a continuous platelet drip and is receiving IV antibiotics. His incision looks good and he hasn't had any bleeding from it. He is getting IV pain medication and is comfortable from that. He sleeps for a brief period and then wakes up crying a bit. We had to change his central IV line dressing on his chest since the OR had ripped half of it off and didn't bother to redress it themselves (typical). Dr Kurtzberg dropped by and told us that tentatively the date for harvesting cells from Tom's bone marrow is August 24th. The Immunology lab here at Duke will use a special technique to deplete the harvested marrow of it's T-cells (those cells responsible for attacking foreign cells). Tommy would be admitted to the hospital about a week prior to that to start his chemotherapy regime. Oh, and by the way, Tom's insurance company said they would pay for a THIRD transplant but that would be it! So glad they're concerned with our son's welfare! To update you on some of the other children: Michelle had her gallbladder out, by laparoscopy, and is doing fairly well. Having some pain around her belly button! Jasmine was discharged from the unit today!!!! Congratulations Jasmine and family!!! Jenna does have "avascular necrosis" of her hip joint and maybe in her toe as well from all the high dose steroids she has been on. This may have to be surgically corrected with a bone graft. Continue to pray for baby Hunter who is in the PICU on a respirator fighting infections and having some problems with liver and kidneys. Pray also for a young lady named Melanie who is 36 days post-transplant and is having a few problems. 4:30pm: We are still waiting to hear word from the OR when Tommy will go down for his surgery. We also were told by the surgeon this morning that they would go in through a typical surgical incision and not use the laparoscopic (little) incisions. I guess they do not feel comfortable with putting air in his belly to expand it with his PEG tube in the way. He will have a 3 to 4 inch long incision and will have more pain from this surgery than if it were done laparoscopically. Please keep Tommy in your prayers (and the surgeon) as this is turning out to be an incredibly long day/night. Pray for the surgeon to still be awake while putting the scalpel to our son! Talk to you later.
26 July 00 (Day T+230) Tommy was admitted today (Wed) in preparation for surgery tomorrow. He has received both platelets and red cells today. His surgery is scheduled for 4:30pm but could occur earlier or later than this time depending on the case load for surgery. We will see the surgeon sometime tomorrow morning and will learn his decision on whether or not he will use a laparoscopic technique to remove Tommy's spleen. We hope he will be able to do a laparoscopic spleenectomy because this would be less painful for Tommy and he would heal quicker than if they open him up to remove his spleen. Please continue to pray for Tommy and all the children going through this difficult transplant process. |
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21 July 00 (Day T+225) Well, only 5 more days until "Thomas and the Magic Railroad" debuts on the big screen! Unfortunately, we will again be in Durham, admitting Tommy to the hospital for his splenectomy on Thursday. I wish I could take him. He has been so good and every time he sees a commercial for it, he goes bananas!! I hope we will get a chance to get him to see it, somehow. We were at clinic today. Please pray for Michelle. She was up since 4:30am with pain and nausea and vomiting. Her mother said she is now having problems with her gallbladder; the culprit for all of this misery, apparently. They did not leave the clinic until sometime around 2 or 3pm and I am not sure if she was admitted or went home. We also saw Keri and Kelley. Keri's white counts are still low...0.9 k/ul. Kelly, his mom said they could not go home, back to Virginia, until his white count was 1.4 k/ul for an entire week!! Who knows when that will happen! They have been struggling for a long time and have little family support. Kelley is very weary. I will try to get her address next time and perhaps some of you kind souls could send her and Keri some uplifting cards to see her through this. The battle is long as you know, and it is draining on family and friends as well, so it is very important for YOU to continue to help with your encouragement and prayers. Tommy's hemoglobin today was 10 g/dl, his white count was 6.9 k/ul and his platelets were 22,000. He did get his usual platelet transfusion. We will not be going back to Duke until Wednesday and, hopefully, his platelet count will hold up until then. Please continue in your prayers for Jasmine, she is improving!!! Pray also for Jenna, she has an MRI of her hip scheduled for 7/25, pray that it is negative. Pray for a little boy named Yousef, who we met briefly before he went in for transplant in March. He is now outpatient after a long stay as an inpatient. Pray for a little boy named Hunter, who is in the PICU on a ventilator. Also for a girl named Shainka who is in the PICU with a fungal pneumonia. And for a boy named Chris C., who is outpatient now but still has a debilitating genetic disease. There are many others who need your prayers. Our Father in heaven knows them all, please keep them in your hearts and in your prayers and think of them each day. We would like to express our sincere thank you to the elders and deacons at the Edgehill congregation for coming to our house to pray with us and for us. We are grateful and we are blessed to have such men with such leadership and strength of faith in Christ. And to our brothers and sisters in Christ, who have prayed unceasingly for us, words will never be a fitting thank you for the gratitude that lies deep within our hearts for you. We love you! " And we have known and believed the love that God has for us. God is love, and he who abides in love abides in God, and God in him. 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." 1 John 4: 16-19 AMEN!
18 July 00 (Day T+222) We have been "celebrating" a "Barney Christmas" here for the past couple of days with Tommy enjoying a Barney Christmas videotape over and over and over again! Once he gets hooked on a video, he doesn't stop for a good while, until he is completely burned out on it. He wants us to buy him presents now .... makes me wonder if he knows something we don't. He already has way too many toys, but it is difficult not to spoil him. We just don't know how much longer we will have him around to spoil. We had a long day at clinic, most of the time just waiting! Let's see...maybe about 6 hours of waiting. (Consider this complaining). We are glad of our decision to go to Duke, but they really do need an efficiency expert to figure out a more expedient means of moving their patients through the clinic. Anyway...Tommy did get a bolus of platelets despite his count being 62,000. They want to keep him higher than they have in the past so he hopefully won't have any bleeding issues. His hemoglobin was 10.8 g/dl and his white blood cell count was 6.3 k/ul. Tom and I have agreed to go ahead with a third transplant attempt using Tom's marrow as the donor. Dr. Kurtzberg thinks that T-cell depleted marrow from a half-matched related parent is better than marrow from anyone unrelated, matched or not. There are no high resolution DNA HLA matches for Tommy on the National Donor Marrow Registry. There were 5/6 and 6/6 HLA antigen matches initially, at low resolution, but once they had gotten to a more specific detailing of the antigens and DNA at high resolution, there were no matches for him. There are no real solutions here and whichever way we go, danger lurks. Tommy is totally in the hands of God. They have Tommy scheduled next Thursday, July 27th, for a laparoscopic splenectomy. He will again be admitted on Wednesday, the day before, to get red cells and platelets prior to surgery. His length of admission, hopefully, if all goes well, is expected to be 5-7 days. (Not sure how we're going to tell him about this ouchy!) Just having a hard time dealing with having to put him through all of this again. The third transplant attempt will probably occur sometime in August or early September. It is moving way too fast. They will give him a couple of weeks to heal after his surgery before they do anything else to him (thank God!). At clinic, we saw Chris S., who is doing pretty well and Michelle, who became pretty ill after walking through the clinic doors and was definitely not herself today. Please continue to pray for Tommy, for the decisions we and his doctors need to make for him, that they will be the right decisions, and that Tommy will not become depressed with continued hospitalizations. And continue in your prayers for these brave children of transplant who strive for their health with each day they see. It is by the grace of God! "Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much." James 5: 13-16 AMEN! 14 July 00 (Day T+218) " Jesus Christ is the same yesterday, today, and forever... Therefore by Him let us continually offer the sacrifice of praise to God, that is, the fruit of our lips, giving thanks to His name. But do not forget to do good and to share, for with such sacrifices God is well pleased." Hebrews 13: 8, 15-16. WE'RE OUTTA THERE! YEA!!! Got out of the hospital this afternoon!!! Tommy had a good night and was able to get his tube feedings today, which he did fine with. His platelet level was up around 179,000 by the time we left. We are having to stay in Durham for a couple of days to check his blood counts and then we can leave, as long as there are no bleeding issues. We are grateful to our friends, the Landins, who graciously opened their beautiful home to us this week. Thank you, friends! It is good for us to be around people who have had a similar experience of being through transplant. It is comforting in its own way. We are grateful for the many friends we have made along the way here, the staff, the parents, the children. They are all so special. " You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house. Let your light so shine before men, that they may see your good works and glorify your Father in heaven." Matthew 5: 14-16 AMEN! 13 July 00 (Day T+217) Tommy had his esophageal dilitation this morning after receiving platelets and a unit of blood. He did well. He is now back in his room at 11:30 am. He will continue to get platelets through the day, depending on his counts. They will want to keep his platelet count high to keep him from having any bleeding issues. He will also not be able eat all day to keep him from vomiting and disturbing the tissue that they stretched. The GI doctor, Dr. Treem, was happy with the immediate results of the procedure. He was able to dilate the stricture which is very high up in his throat. He also was able to pass a 10mm endoscope through the narrowing, unlike the previous time when he could not pass any scope through it,even after "dilation". Hopefully this will help his symptoms and will see him through the next few months. The next step will be to decide whether or not to put him through a third transplant, using Tom's half-matched marrow, a splenectomy (prior to transplant), and some radiation and chemo. WHEW! An incredible load for a little body to bear. Tommy is truly amazing. He has incredible strength and incredible understanding for such a little boy. He has given us strength from his strength, endurance from his endurance. The blessings of each day are the blessings that are Tommy; God alone is great in his wisdom and for that we are truly grateful. Praise His Holy Name this day and rejoice with us. 11 July 00 (Day T+215) THANK YOU LORD FOR LOVING ME AND THANK YOU LORD FOR BLESSING ME, THANK YOU LORD FOR MAKING ME WHOLE AND SAVING MY SOUL ~ ~ ~ ~ I WANT TO THANK YOU LORD FOR LOVING ME, THANK YOU LORD FOR SAVING MY SOUL! ~ ~ ~ That song just popped into my head. I like it. It is a blessing to have a healthy child. It is also a blessing to have a chronically-ill child, in a different way. We are all blessed differently. How we survive it all is just by the grace and mercy of our God. With heavy hearts, we have heard that another sweet little boy, Michael Rice, has left us in this physical realm and his soul has gone on to a much better place in paradise. How thankful we can be for the plan of salvation, the promise of eternity, we have through Jesus and the Word of God, if we are obedient sons of God. Anyway, I packed up the "kitchen sink" (Tommy's meds, food, feeding supplies, poles, pumps, etc...) yesterday and we travelled down here to Durham today. We had our clinic visit with Sue and Dr. Kurtzberg. It was quite informative. If we decide to go through with a 3rd transplant for Tommy, he will first need to have his spleen taken out to help reduce the chance of graft rejection. (SIGH ...) Dr. Kurtzberg also wants to give him some limited radiation to his thoracic lymph nodes prior to transplant to help reduce the number of lymphocytes that could reject the donated cells. (SIGH ...) We just feel pain for all the pain he would have to endure and it makes us sad and our hearts sink. Enough of thinking of the sad stuff, however. Tommy has been watching the movie "Toy Story," A LOT!! His platelet level was 9,000 today, so another platelet transfusion. His hemoglobin was 9.1 g/dl so no red cell transfusion today; maybe tomorrow before his procedure (esophageal endoscopy/dilatation). Tommy will go into the hospital tomorrow (Wed) around 4pm. He is scheduled for this dilatation at 7:30am Thursday morning. He will be put to sleep again, under general anesthesia to dilate his esophageal stricture. We hope to only have to stay in the hospital until Friday (Of course, once you're "imprisoned" there, you never know when you'll get out!). They are concerned with bleeding, of course. He will be on another platelet drip before and after the procedure. I am hoping we can leave for home by Saturday, but the way Dr. K was talking, she wants us to be prepared to stay in Durham through the whole weekend. Bum Deal! I hope we can leave sooner. We saw Jenna, Michelle, & Chris S. today. They all looked so very good!! (Feeling good, however, is another topic!). Thank you for all of your prayers for our son! " 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......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.....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: 1-5,14,16,17. AMEN! 7 July 00 (Day T+211) Hi All! Well, another clinic visit today. Got home before sunset, so that's always good! Tommy received platelets for a level of 10,000 today (wonder what it would have been had he not gotten platelets on Monday!). His hemoglobin was good at 10.3 g/dl and his white blood cell count was 4.9 k/ul. We will take Tommy in to clinic Tuesday to see Dr. Kurtzberg, and will be staying in Durham from then until Friday or Saturday because his esophageal dilatation has been rescheduled for Thursday 13 July, first thing in the morning. He will hopefully only be in the hospital overnight if all goes well like last time. Please pray that they can dilate his narrowed esophagus and that he will not have any complications from it. We have to go into the hospital on Wednesday afternoon or evening, so they can tank him up on platelets before the procedure. I know he is not going to like this. Ever since he had the barium swallow xray done, whenever we go to clinic, he points to his throat and then makes a camera type sign thinking that he is going to have to go through that again. He has a right to be paranoid. Can't blame him there. We have heard good news from Jasmine's website! They now think they know what has been causing all of her symptoms of fever, abdominal pain, enlarged liver, etc. They think it is from an infection they found in her bone marrow and which is treatable! I know they are very grateful for all of your prayers for her! We are so glad to hear good news! Keri is now outpatient and his white blood cells counts are slowly increasing. Ed is thinking of getting Chris S. a dog to take his mind off of himself! Some good therapy, but more work for them both! I know Tommy would LOVE a doggie, but we have no time to take care of another needy soul around here! Please continue in your steadfast prayers for Tommy and all of these children who have been through so much! Your encouraging words of support from your e-mail and cards has been an ongoing source of hope for us. Don't quit! Many thanks with grateful hearts! " Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, ' Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, ' Neither this man nor his parents sinned, but that the works of God should be revealed in him.' " John 9: 1-3 Amen! |
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5 July 00 (Day T+209) Hope you all had a HAPPY 4TH OF JULY!!!!!!! Hope you had a grand time! We took Tommy to the fireworks here in town, sat away from any crowd and had a good time. Actually, I thought the display was better last year than this, but at least Tommy had a good time seeing the "boomers". We had to go to clinic Monday since they were closed on this holiday. We had a long day. It took them 2 hours from the time they took Tommy's bloodwork to the time they decided to run it. That made us angry. Then it took them another hour before Tommy got any blood products. His hemoglobin was 8.1, so they were going to give him blood. His platelets, however, were 28,000, so they weren't going to give him any platelets. This is where I lost control of my temper. They figured Tommy was going to last 4 days on that count??? When the nurse practitioner came and told us their plans for the day (no platelets for Tommy), I lost my cool. They do not have to live like this, they don't have to worry that every little bump may cause uncontrollable bleeding. If he isn't growing any new cells, then he needs platelets. These people have no clue what our battle has been like: days of endless waiting, the stress, the anxiety, the lack of answers, our child's life on the line. They aren't sleep deprived either, that's for sure! Anyway, I'm not proud of it, I'm just sorry for their lack of concern about our personal situation. We will be glad when Sue and Dr. K. are out of the inpatient mode and back in clinic (next week). They are efficient and get things done that need to be done, otherwise we get these people that run around with their heads cut off and don't have a clue about what is going on with Tommy! Ah well..... After all that, Tommy did end up getting platelets. We heard that his next esophageal dilitation is not scheduled until July 28th, but it may get moved up if Dr. Kurtzberg can, with any luck, influence the situation. That is a long wait, especially since Tommy is needing another transplant. I know she would like to have it done sooner, so Tommy is not put at more risk for chance of infection, waiting so long. So life goes on, as it has. No end in site. No obvious good choice to make. Just enjoying each day as it comes, with whatever it brings. The Lord was so right when he said not to worry about tomorrow for today has trouble enough of its own! (Matthew 6: 34). Please remember Jasmine, Keri, Michael Rice, Connor, Alex M., Chris S., & Stephen in your prayers. Jasmine is having an especially rough go of it lately, back in the hospital. Michael Rice may have relapsed with leukemia as well as Alexandra M. "He went a little farther and fell on His face, and prayed, saying, ' O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will.' " Matthew 26: 39 Amen! " Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perserverance; and perserverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts..." Romans 5: 1-5 AMEN! 30 June 00 (Day T+204) Wow! Is it the end of June already???? Seems like another summer is going to pass us by all too quickly. Nana and I took Tommy to the clinic today and had a relatively short visit. His platelet count was 17,000, but they transfused him with platelets anyway since they know he will not grow any new cells in any great quantity. His hemoglobin was 8.9 g/dl and his white blood cell count was down again at 3.7 k/ul. I am concerned that this trend downward in his white count (despite receiving continued cell growth stimulating factor) may reflect an increasing aplastic marrow and put him at an increased risk for infections. Hopefully, this is not the case. We are still waiting word on when GI will schedule a repeat dilatation of Tommy's esophagus. It may be toward the end of next week or the week after. Tommy has been a happy boy and has a good amount of energy despite some physical things that hold him back. He has been doing well with his "Ready to Read with Pooh" CD-ROM on the computer. He knows how to match rhyming words, follow a story line, and is practicing phonics related to the alphabet. His favorite Occupational Therapist (OT), "Mr. Guy", will be coming over once a week starting in July to work with Tommy on certain skills to improve his fine and gross motor coordination. We are looking forward to taking Tommy to the 4th of July fireworks, which is a tradition at this house, and perhaps to get in a matinee (someday) of the new movie "Thomas (the tank engine) and the Magic Railroad", something he can't wait to see! Please remember Tommy in your prayers tonight and each day. Thank you for your steadfast hearts in prayer for him and us. Also remember Jasmine, who is back in the hospital with a high fever and belly pain. She has been fighting so long to feel good: www.pilink.com/nc/jasmine. And Keri, who has a white blood cell count of less than 1.0 : (www.pilink.com/ks/kerkel). And Alex M. who has relapsed with leukemia after having a great transplant recovery: www.glencove.com/tmartini/alex.htm. Also remember our friends, Jordan and Thomas who are home but still have an uncertain future. Please pray for these children and their parents. I can tell you that you do not know what any of this is like unless you've been there for yourself, with your child's life on the line, isolated from the "real world" for days on end, grappling with the unknown complication and the untold...(the fever, the pain, the life-threatening infection....). I could write a million words and they still would not be able to convey the transplant world appropriate enough to you. I pray for you that you may never have to experience it...ever! One thing this whole experience does is make you appreciate what your child CAN do as opposed to what he/she can't do. It makes some of the achievements we all have our kids (and ourselves) chase after in the "normal world" look a whole lot more meaningless when you see children fighting for their lives each day. " At that time Jesus answered and said, ' I thank You, Father, Lord of heaven and earth, because You have hidden these things from the wise and prudent and have revealed them to babes. Even so, Father, for so it seemed good in Your sight. All things have been delivered to Me by My Father, and no one knows the Son except the Father. Nor does anyone know the Father except the Son, and he to whom the Son wills to reveal Him. Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.' " Matthew 11: 25-30. Amen! 27 June 00 (Day T+201) Tommy received a platelet transfusion today because his platelet count was down to 4,000. He also received his monthly IV pentamadine (a drug which helps prevent pneumocystic carinii pnemonia). His white cell count was 4.3 k/ul and his hemoglobin level was 9.9 g/dl. Dr. Kurtzberg and the gastro-intestinal (GI) doctor have reviewed the barium swallow x-ray films from last Friday. The plan as we understand it is for Tommy to undergo another endoscopy/dilation of his esophagus to examine the stricture and open it up some more. The GI doctor was not available today so we do not yet know when this will be done. It will probably happen within the next week or two with Tommy getting platelets right before the procedure and then after the procedure being admitted to the hospital with a platelet drip for observation. Tommy has not been coughing up secretions as often as he was before the first dilation. He has been able to sleep pretty well lately. Thanks for all the many prayers for Tommy. 23 June 00 (Day T+197) Well, we must say just how proud we are of our buckaroo, Tommy! What a champ! He went through the Barium swallow xray, swallowing small amounts of contrast liquid with a syringe, with some crying, but cooperated perfectly! It was a lot to ask of a 5 year old who has been examined inside out since he was an infant. He even offered the pediatric radiologist a dollar bill he had pulled out of his pocket [an unusual characteristic for a Burnette : ^) ]. It was the first time this doctor had ever been given money from a child for doing the study! It was a good laugh. The most terrifying moment was when the xray tech handed us the contrast liquid in a huge 60ml syringe with a large bore tip! Our eyes popped! We offered them use of our 5ml oral-tipped syringe so it would be a LOT less threatening! Tommy was very brave and he was rewarded justly for it! Funny part about the xray was that they could not see any "webbing" or "pockets" collecting any of the contrast liquid. In fact, Tommy was swallowing the stuff just fine and it was going down the proper channel to his stomach. AND the radiologist said it looked like the esophageal stricture was small but not as narrow as the GI doctor had told us it was. They were going to confer with the GI doctor and Tommy's bone marrow doctor and look at the pictures together. We think they will want to try to dilate his esophagus again sometime in the near future. Besides this, Tommy had a platelet transfusion for a count of 8,000 and after the xray we had to go back to get a red cell transfusion since his hemoglobin was 8.0 g/dl. Luckily we were able to get home before nightfall even with all of that going on! God was certainly with Tommy and the staff who helped him through this! The radiologist was great and talked with Tommy before doing anything to him. We are thankful to you all for the comfort of your prayers! Prayer is such a powerful route to the Father, even though sometimes it doesn't become answered in a way WE would like it to be. Walking through the back hall of the clinic, there was a BMT mother in tears about her child. She was telling someone that she had said a special prayer the night before just for him; something was terribly wrong. Kelley is another brave soul, who's child, Keri, has continued to drop his counts and not recover them (his WBC was 0.3!). She doesn't know if he ever will. AT this point, she has decided to let him be. She told me Keri was happy now. That is a very courageous decision. We saw Chris, who has been there about a year and a half now, with a lot of post-transplant complications. He had been doing well recently, but has just been discharged from the hospital for pancreaitis and fluid in his abdomen. Ed, his father, looked a bit worn this time. It is a long, difficult road, this transplant process. Something that just goes on and on forever, and for most children, with less than favorable outcomes. To dwell on all the children we have known who have been so brave in the face of such devastating illnesses, brings forth a flood of emotion; such that it must be tempered with faith, otherwise it is too overwhelming to understand. Thank you all again for your thoughts and prayers! Tommy will see special visitors tomorrow, as his Grandma and Grandpa Burnette are in the area! " In You, O Lord, I put my trust; Let me never be ashamed; deliver me in Your righteousness. Bow down Your ear to me, deliver me speedily; be my rock of refuge, a fortress of defense to save me. For You are my rock and my fortress; Therefore, for Your name's sake, lead me and guide me. Pull me out of the net which they have secretly laid for me, For You are my strength. " Psalm 31: 1-4 AMEN! 22 June 00 (Day T+196) Hi everyone! Just a note to let you know that Tommy is scheduled for a Barium Swallow xray tomorrow (Friday) to evaluate his esophageal anatomy (i.e., the webbing, blind pockets, and any thinning or bulging of the walls of the esophagus, as well). It is scheduled for approximately 1pm. Please say a few extra prayers for Tommy so that he will cooperate and drink some of this contrast dye that they need for him to do. Otherwise they may want to place a tube down his nose into his esophagus and this will probably only happen with a whole lot of fighting! It would be very traumatic for him and us! The medication Dr. Kurtzberg gave us to decrease the mucus in his throat seems to be working, but makes him rather sleepy; a good drug for bedtime! We are able to get some longer periods of sleep now than we have had in the past 2 weeks; a blessing in itself! " 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 unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16 AMEN! 20 June 00 (Day T+194) We had a clinic visit today and are now back home in Virginia. Tommy did not need any transfusions. His platelet level today was 72,000 as a result of all the platelets he received last Friday and Saturday in the hospital. However, this count is expected to drop quite fast and he could very well require platelets by this Friday. His hemoglobin level was 9.6 g/dl and his white blood cell count was 6.4 k/ul. We had a lot to discuss with Dr. Kurtzberg today. She has been talking with the GI doctor who performed the esophageal dilation and they think that the next step concerning the stricture and associated "webbing" in Tommy's esophagus is to do some type of "imaging" to get a better picture of what's going on there. They will consult with radiology and come up with the best type of imaging (e.g., CT Scan, etc.) and method of performing it to get the best possible images. This may require that Tommy be sedated or put under anesthesia. Once they have good images of these false lumens (webbing) in his esophagus then they can determine the best way to remove them, most likely some type of surgery. Dr. Kurtzberg gave us a prescription for a drug to try which should help to slow down the amount of secretions in his throat so that he can rest better at night and not have to repeatedly cough up slime during the night. The DNA level HLA testing of Tommy's bone marrow, conducted at Duke, came back showing no donor cells which means this second cord blood transplant has failed. Dr. Kurtzberg discussed the results of the HLA testing of Linette and I and stated that I would be the better bone marrow donor if we decided to go with a third transplant using bone marrow instead of cord blood. They would deplete the "T-cells" from the harvested marrow to help prevent Graft-Versus-Host-Disease (GVHD). However, even with T-cell depleted bone marrow there is a chance that Tommy will get GVHD. Without a bone marrow transplant Tommy will remain transfusion dependent, which cannot continue indefinitely because his body will develop antibodies against the transfusions and the transfusions will then be no longer effective. Tommy has been feeling pretty tired lately due to the lack of good sleep. Thanks for all of your many prayers for us. 17 June 00 (Day T+191) Hi all! We have been discharged from the hospital today but are still in Durham. We may be here until Tuesday. Plans are to keep his platelet level higher than usual to prevent any bleeding. Tommy is in pretty good spirits. He had to wait until today to have anything to eat via his stomach (PEG) tube. The esophageal lumen is so narrow that taking anything orally is out of the question for now. This dilatation did not help the coughing and pooling of secretions he has been having, don't know if it will. In addition to the narrowed lumen (opening) which is only 2 to 3 mm wide, there is tissue next to it that has formed 2 false lumens (blind openings that are like pockets) which are crowding the true lumen. These pockets are probably where the secretions are pooling. The gastro-intestinal (GI) physician is going to confer with colleagues to consider if there is some type of treatment to get rid of the false lumens, but that would mean possibly more damage to the tissue, and perhaps the same thing happening again because of the bizarre nature of tissue healing of this disease. Please continue in your prayers for Tommy and for all the children here that have been through transplant or are going through it presently. Tommy has been the bravest little buckaroo lately with all of the scary things he has gone through! We love him so! " 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..." Peter 1: 3 Amen! 16 June 00 (Day T+190) Today Tommy had an endoscopy and dilation of a stricture in his upper esophagus. This stricture had closed down and was preventing Tommy from being able to swallow his saliva. This procedure was done in the operating room under general anesthesia and took about 2 hours. The procedure went fine. The doctor said the stricture looked worse this time than it did last summer when they dilated it. Today the doctor was able to dilate it to 12mm, however as soon as the "balloon" is removed the stricture shrinks back to just slightly larger its initial size of 1 to 2 mm. This procedure is hard on the esophagus and causes bleeding and scarring. Tommy received a large platelet transfusion prior to the dilation and was continued on a platelet drip during the procedure. It will take a couple days to know for sure if this dilation opened up his esophagus enough to where he can at least swallow his saliva. These dilations usually have to be repeated several times to be effective. Following this procedure Tommy was admitted to the hospital (Pediatric Bone Marrow Transplant Unit) for observation. They are keeping a close eye on his platelet count and any signs of bleeding. Tommy is doing fine and should be able to start back with his tube feedings tomorrow. 14 June 00 (Day T+188) Yesterday (Tuesday) was another long and very busy day for us at clinic. Tommy had a respiratory virus test, chest x-ray, ultrasound of his spleen, an infusion of IVIG (human immunoglobins), and a red cell transfusion. Then Dr. Kurtzberg came in to discuss the results of the x-ray and ultrasound and what she could tell us from examining his bone marrow aspirate under the microscope. Unfortunately it was not the news we had hoped and prayed for. Tommy's bone marrow aspirate did not show a normal quantity of cells in it. Instead it was quite low in number of cells. She did see some precursors for red cells and white cells. She did not see any precursors for platelets. The ultrasound of Tommy's spleen indicated that it was normal in size. Thus, the spleen is not the reason for Tommy's low blood counts. She did not have the bone marrow biopsy results back however she is certain that it will indicate that his bone marrow is "hypoplastic" (i.e., decreased number of cells). The bone marrow aspirate is undergoing DNA level HLA typing to determine if there are any donor cells present. This testing is being done at both Duke and at the New York Cord Blood Center. The results from Duke should be back in about a week. The continuos thick mucus that has been gurgling in the back of his throat and which he coughs up is not getting better. He has been coughing up this stuff every few minutes round the clock and none of us have been able to get any decent sleep. His lungs sound OK and his chest x-ray did not show any signs that this was in his lungs. They think that what has happened is that a stricture (narrowing) in his esophagus, which he has had for years, has closed down and is preventing Tommy from being able to swallow his saliva. The saliva then "pools" in his throat and becomes very slimy until he coughs it out. They want to dilate (enlarge) this stricture in his esophagus this Friday. The plan is to give Tommy platelets Friday morning prior to the procedure. The dilation will be done under anesthesia after which they would admit Tommy to the hospital (Pediatric Bone Marrow Transplant Unit) for a few days for a continuos platelet drip to control the bleeding from the dilation. Though we don't like having to put Tommy through this, it is important that this condition be corrected soon because there is a danger that he might aspirate some of this mucus into his lungs and cause an infection in his lungs. Thanks for the many prayers for us. |
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12 June 00 (Day T+186) Greetings again from Durham! We are fortunate that today went well, despite our frenzied pace last night, this morning and our lack of sleep. God was definitely with us driving down. I couldn't have done it; don't know how Tom did! Tommy kept us awake most of our shortened night. He still is congested with a LOT of thick yucky mucus that won't quit. It just makes him sound like something gurgling underwater. He is so stubborn (don't know where he gets it from) that he doesn't want to cough it out, but would rather let it rattle around the back of his throat. This is quite annoying! (Especially to an ICU nurse who's instincts want to suction the stuff OUT!). Oh well, another control issue! Anyway, we were rushed trying to get down here. The clinic was PACKED. I have never seen it so full so early in the morning. I'm glad we usually don't come on Mondays. Tuesday is busy enough! Tommy's platelet count was only 4,000 so another transfusion of platelets before getting the bone marrow biopsy/aspirate done. His hemoglobin was 8.2 g/dl and his other liver and kidney studies were normal or close to it. The staff in the children's pre-op holding area and PACU (post-anesthesia care unit) were wonderful. Tommy did not come out of anesthesia crying, kicking, or screaming! He was calm, a little fussy, but quite mild-mannered considering previous history. Gil Ciocci, PNP, (pediatric nurse practitioner) did the bone marrow aspirate and biopsy, since our wonderful PNP, Sue, is on a missionary trip to the Philippines! Gil did a good job and things apparently went smoothly for them. Before we took Tommy down for his aspirate, both Tom and I had our blood drawn for high resolution (DNA level) HLA testing, viral studies, and who knows what all else! Tom is a lab tech's dream: huge veins, don't even need a tourniquet! I, however, am a lab tech's nightmare: NO VEINS! Being cold didn't help either. And of course, they needed to draw more blood from me than from Tom! I had just returned from getting a drink downstairs since I knew this was coming (but not so soon, though) and wanted to keep hydrated. Last time I had all these blood tests done at Johns-Hopkins, it took them FIVE tries to draw a small amount of blood. It was painful. Today was better, just two tries and success. We all survived the pokes of the day. Thank you for all of your support and prayers. We definitely need them! This is a real struggle for us. Good news has been sparse throughout both of these transplants. A BIG thank you to all the ladies at the Edgehill congregation who had a successful yard sale for the Tommy fund! You don't know how much this means to us! They have nurtured us along this difficult road. I pray that we will find peace with whatever decisions we make. God is our guide along the road of life. We did see Kelley and Keri briefly today. His white blood cell count is still only 0.8 k/ul. Hopefully we will see them again tomorrow and get more news on how they are doing. Kelley is always a source of inspiration and faith. We hope and pray to be able to write good news to you after tomorrow's clinic visit. I am reminded of a song I love to sing: "God is so good! God is so gooooood! God is so good, He's sooooo good to me!" 9 June 00 (Day T+183) Today, we took Nana with us to clinic at Duke so Daddy could work. It is interesting trying to make life as "normal" as possible these post-transplant days. Tommy has been coughing up a lot of thick mucus from the back of his throat this past week, so we were able to get a prescription for an antibiotic from Dr. Kurtzberg. We don't want this "cold" (or whatever it is) to prevent this bone marrow aspirate from happening on Monday. The staff has "jumped through hoops" to get us scheduled so quickly. Tommy did not need platelets or red cells today; his platelet count was 21,000 and his hemoglobin was 9.5 g/dl. Most likely they will give him platelets before his bone marrow aspirate on Monday. We will go to Duke on Monday for the transfusion, (if needed), then the bone marrow aspirate (approximately 1pm), and finally, HLA donor testing on both Tom and I. Tuesday, Tommy will have an ultrasound of his spleen done around 2:15pm and we will meet with Dr. Kurtzberg afterwards to find out what Tommy's bone marrow looked liked from the aspirate done on Monday. She will be able to tell some preliminary things from just looking under a microscope at the cells in the marrow. Please continue in your prayers that Tommy does have new donor cells growing in his marrow, lots of them. If his marrow is "empty" we know that we have lost this battle again. We do not know what road to take here yet with Tommy. We both long for our son to be "healthy", but at what cost is this? No easy road to take. We lose either way, eventually. Dyskeratosis will win out eventually or we risk his life sooner with a third transplant attempt. You see, even though we may cure the bone marrow failure with a successful transplant, the dyskeratosis gene is still in his DNA, so it will probably continue to affect the other parts of his body, and those already ravaged by it. I still feel numbed by the whole thing, but I refuse to give up on this one until the results from his bone marrow aspirate are back. I feel overwhelmed by feelings that I had way back a year or more ago when we first learned what his diagnosis finally was, and then the even worse news of bone marrow failure! I was very scared that Tommy would not survive the first transplant! Thanks be to God, he has survived two! We never thought we'd have to go there either. Some how, some way, we just keep trying to jump over the hurdles in front of us; they loom so very large. God is our strength and our hope. " Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 Amen! 7 June 00 (Day T+181) We had our longest and unfortunately saddest day ever at clinic yesterday (Tuesday). We left there at about 8:30pm having received very disappointing news from Dr. Kurtzberg. DNA HLA (Human Leukocyte Antigen) testing of his blood shows no donor blood cells. This means that Tommy has most likely lost his bone marrow graft (donor cells) and that this second transplant has failed. Back in January, HLA testing of his blood showed that Tommy had donor cells (i.e., blood cells which originated from the donor stem cells he received). Between then and now it appears that his original immune system has grown back strong enough to destroy his donor graft. This Monday 12 June, they will perform a bone marrow aspirate to see if Tommy might have some donor cells still in his bone marrow. Sometimes what can happen is the bone marrow can be making blood cells but the spleen removes them from the blood stream as fast as the bone marrow can produce them. Under this situation the treatment is to remove the spleen. They will do an ultra-sound of his spleen next Tuesday to see if it is possibly enlarged from consuming blood cells. The options as to what to do next all hinge on what they find in his bone marrow. If he has lots of donor cells in the marrow, then possibly the spleen is the problem. If he has donor cells in "low numbers" in the bone marrow then the plan would be to give it some more time and see if the blood counts will improve. If there are no donor cells in the marrow and just a low number of his own original cells (which are progressively dying from his dyskeratosis congenita disease), then the options point toward a third transplant. During our clinic visit yesterday Dr. Kurtzberg discussed several transplant options, but all of them come with very high risk. She thinks that if a third transplant is required, then the source of the donor stem cells should be donor bone marrow instead of cord blood, since cord blood has not worked so far for Tommy. This brings a much higher risk of GVHD (Graft-Versus-Host Disease) which for Tommy is very serious due to his underling disease of dyskeratosis congenita. She stated that the donor's bone marrow could be depleted of T-cells prior to transplant to reduce likelihood and severity of GVHD but that doing this also increases the chance of graft-rejection. She also mentioned that she has been talking to leading bone marrow transplant experts from around the world specifically on how to best approach another transplant for Tommy. All of transplant options she discussed with us are high risk and will be very hard on Tommy. We are absolutely, totally overwhelmed by this news and feel like we are trapped in a terrible nightmare. At this point the best outcome that we can pray for is that they will find donor cells in his bone marrow and they will find the cause for why the blood counts are so low (e.g., spleen). Tommy's platelet count yesterday was down to 10,000 so they gave him a platelet transfusion. His hemoglobin level was 11.1 g/dl and his white cell count was 5.2 k/ul. Please continue your many prayers for Tommy. He has been through so much already and the thought of having to put him through another transplant is devastating. We also need prayers for strength and wisdom to make the right decisions on Tommy's treatment. We know God has answered many, many prayers for Tommy and has protected him through two back to back cord blood transplants. We are thankful for all the many prayers for us and the support we have received. Also, please remember to pray for the many other children here who are going through this bone marrow transplant process. 2 June 00 (Day T+176) " But now, thus says the Lord, who created you, O Jacob, And He who formed you, O Israel: ' Fear not, for I have redeemed you; I have called you by your name; You are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. when you walk through the fire, you shall not be burned, Nor shall the flame scorch you. For I am the Lord your God, the Holy One of Israel, your Savior; ' Isaiah 43: 1-3 Amen! Hello everyone! A very long day today at clinic. We were hoping and praying for better news than we received. Tommy's platelet count was only 2,000! His hemoglobin was also low at 7.1 g/dl (a 2.5 gram drop in just 3 days)! And even his white blood cell count was down to 3.5 k/ul! He continues to have bloody stools and it is obviously affecting his blood counts. Today they gave Tommy both a platelet transfusion and a red cell transfusion. There were no new cells seen on his blood smear today, which is very disturbing to us. We feel like we are running in circles here. We need to somehow control this GI bleeding that he is having. The bleeding may be throughout his intestines from his Dyskeratosis, or perhaps it may be some form of graft-vs-host disease in his GI track. It is difficult to say what is behind all of this, because his doctors do not want to do any invasive procedures to look at his intestines for fear of serious complications. We did get a chance to talk with Sue, Tommy's nurse practitioner who knows him very well, and she is going to talk with his primary physician, Dr. Kurtzberg, this weekend. We may end up back at Duke for a while. I think we both felt like crying today and I'm not sure what to think anymore. To be healed may not be God's will for Tommy, but that is a very difficult thought to bring to mind. We realize God has a plan for us all, but what that is for us, for Tommy, is not clear and difficult to understand. But we keep on each day by the faith we have in the Lord, that through Him all things are possible and through Him we can bear our trials, suffer what cross we have to bear, and hopefully live a life that is pleasing in His sight until that final Day of Salvation, when all will be brought to light. If we lose faith, we have no hope. To remember the cross of Jesus, His Life, His suffering, His grace, His mercy, His forgiveness, His great Love for us, will see us through these days that are, that have been, that may yet come. Please remember our transplant friends in your prayers today: Jenna, Michelle, Chris, Alex M., Alex S., P.G., Maddy, Torie, Jordan, Thomas, Stephen, Keri, Kyle, Tre-Quan, Jasmine, Jacob, and countless others who have gone before us and follow after us. 30 May 00 (Day T+173) Hello Family and Friends! Our trip to Duke today was relatively uneventful and that's good. Tommy had a TON of energy!! He had a blast throwing paper "snowballs" at the staff while waiting for Miss Sue to see him in his exam room (This was Nana's idea, as she went with us today. Nana gets Tommy very wound up!). He did not get any transfusions today. His hemoglobin was 9.6 g/dl and his platelet count was 13,000. This makes me very nervous about hanging out with that low of a platelet count until Friday! But if this is what it takes to stimulate his bone marrow into making more new cells, then I will have to be brave and learn from Tommy! His white cell count was 6.9 k/ul, which is good, but he is still on the stimulating factor (G-CSF) at a rather large dose, so we hope his white count will also start to increase, so they can cut back on that drug. Tommy's liver enzymes were down quite a bit, for which we are very glad, and his kidney function lab values were all normal. Blood was also drawn for HLA antigen testing to see if he still has detectable donor cells in his bloodstream. Please pray for this testing, that it will be positive and he will still have donor cells in his bloodstream. They are doing this testing at Duke, so we should have results in about a week! Next week they will start his 6 month post-transplant studies. It's kind of funny, cuz we haven't gotten much of any results back from any studies ever done on our child (still none from NY Blood Center)! It is a great test of patience! We can be thankful for Tommy's continued energy and his health as it is, however. Tommy is still having bloody and painful stools, so we ask that you pray for healing from that and pray for the yeast infection to clear from his GI tract. We realize, even without knowing whether this 2nd transplant is going to be successful, that Tommy is a blessed little boy to still be outpatient and at home!!! On a more difficult note, we are sad to hear of the passing of sweet little baby Britton Orrick on Friday. She, too, gave it her all, with all her might, to survive! She spent most of her short, precious life in Duke Children's Hospital! She came from wonderful parents who never were willing to give up on her! Thankfully, God is in control of our lives, and if we could only remember that more often than we do! A child dying of some nasty disease does not make any sense to us here on earth, but the Lord knows all and why, and we are to have complete trust and faith in Him; to believe that He has our best interest close to His heart! These circumstances make it so difficult to understand, to even ponder! We are all grateful for your prayers! Thank you, again, Cecilia, for your words of encouragement! I'm glad you take the time to track us down when you're in clinic!! Michelle has fared well on a recent journey out-of-state and it has given her a much more positive attitude about everything! That, in itself, is a joyful blessing! Please remember little Keri who has been readmitted to the bone marrow unit for a skin infection. His blood counts had drastically taken a nose dive in the past couple of weeks and they have had to go back to Duke. Last Friday they were still outpatient, but Keri had practically no white count (0.4)! They were readmitted on Monday. Pray that his counts will increase again and he will not have to suffer a second transplant! Many thanks for your continued prayers for Tommy and all these transplant children! Please don't stop!!! A very special thank you to the Lord's church at Carlisle, PA for your generosity and love for the Lord and for our Tommy! " Through the Lord's mercies we are not consumed, because His compassions fail not. They are new every morning; Great is Your faithfulness, ' The Lord is my portion,' says my soul, ' Therefore I hope in Him! ' The Lord is good to those who wait for Him, To the soul who seeks Him. It is good that one should hope and wait quietly for the salvation of the Lord. It is good for a man to bear the yoke in his youth. " Lamentations 3: 22-27; AMEN! 26 May 00 (Day T+169) Tommy's hemoglobin and platelet counts today (Friday) were very low and thus he needed both a red cell transfusion and a platelet transfusion. His hemoglobin was 6.5 g/dl and his platelet count was 2,000 (a record low, normal platelet counts for health individuals is 150,000 to 400,000). The good news is that he made it a full week before needing a platelet transfusion. He still has some rectal bleeding (i.e., blood in his stools) which is causing him to use up precious platelets and red cells. His blood smear today did show some new, large, young platelets which he made on his own (old transfused platelets are much smaller in size). This means that his bone marrow is producing some cells. He has a long way to go before he is transfusion independent but hopefully he is moving in the right direction. Please continue to pray for Tommy and all the children going through this difficult bone marrow transplant process. 23 May 00 (Day T+166) "All the kings of the earth shall praise You, O Lord, when they hear the words of Your mouth. Yes, they shall sing of the ways of the Lord, for great is the glory of the Lord. Though the Lord is on high, yet He regards the lowly; but the proud He knows from afar. Though I walk in the midst of trouble, You will revive me; You will stretch out Your hand against the wrath of my enemies, and Your right hand will save me. The Lord will perfect that which concerns me; Your mercy, O Lord, endures forever; do not forsake the works of Your hands." Psalm 138: 4-8 AMEN!!! Many thanks for your prayerfulness for Tommy!! We have some GOOD NEWS!!! We made our way to Duke wondering again if it would be transfusion time, holding out hope that it would not be, and the Lord was merciful to us, no transfusions! Tommy's platelet count today was 18,000 at four days since his last transfusion (19 May). This is good, because he is usually at 5 or 6,000 by this time. Another GOOD piece of news was that Dr. Kurtzberg had us look at a blood smear of his cells under a microscope in the lab at clinic and she showed us that he had NEW, YOUNG platelet cells growing!!!! YEA!!!! And that he was also making new young red cells and a few white cells. We are hopeful these new cells are from his donor cells. Since Tommy's own bone marrow was not totally ablated (wiped out) prior to transplant, he could still have some of his own cells growing (his own diseased cells will eventually die out). We are hopeful that the platelets, at least, are from donor stem cells, since he hardly had any platelet cells prior to this second cord blood transplant. So we must still wait and be ever hopeful that this 2nd transplant will eventually come to fruition. As I looked through my Bible, I saw the verse about how a thousand years are as a day to the Lord; I really need to remember that! Tommy's hemoglobin was only 7.5 g/dl today and Dr. K. did not want to transfuse him with red blood cells, either. She will try to "stress" his bone marrow more now, by letting his counts drop, to see if it will stimulate production of more new cells. Hopefully this will work. Tonight Tommy is looking a bit more pale than he had been this morning. He was quite normally pink in color today and that is another reason his doctor did not feel like she needed to transfuse him, because he looked so good and checked out well during his physical exam. It was also a very good and exciting day for us to see a lot of friends from our inpatient transplant days. Jenna, Chris, P.G., Michelle, & Maddy all looked very wonderful! Chris really looked GREAT having been through so much lately! Michelle seems to be on the mend from her lung infection and Jenna is losing a lot of that steroid look and has a whole bunch of curly dark hair! P.G. and his parents have gotten the OK to go home to New Jersey today! What excitement that was! And then there was Maddy!!! Maddy looks terrific! She and her parents had to come up from Florida for her 9 month check-up. Maddy was in kind of a daze being in new surroundings in the new clinic. She is doing very well. So, all in all, the Lord has given us a great day. We even got seen shortly after arriving at the clinic and were out the door by 3pm!! Another incredible event! We will hold off doing any further bone marrow tests until we see if waiting a bit longer will produce any new cellular results for the positive (i.e., improving blood counts). They may do HLA testing of his blood next week to check for presence of donor cells in his blood. They did not want to do this test today because Tommy's hemoglobin was so low and this test requires a lot of blood to be drawn. Thank you again for your continued prayers to the Lord for Tommy and these other transplant children. Please don't stop! Pray that Tommy will grow some more new cells between now and Friday; and pray that we won't need to take him back to Duke before then because of bleeding or other symptoms of low blood counts. We give thanks to the Lord for YOU and your steadfastness! "Assuredly, I say to you, if you have faith and do not doubt, you will not only do what was done to the fig tree, but also if you say to this mountain, 'Be removed and be cast into the sea,' it will be done. And all things, whatever you ask in prayer, believing, you will receive." Matthew 21: 21-22 ; AMEN! 19 May 00 (Day T+162) Another trip down to Duke behind us! It was short, but not wrought with good news, I'm afraid! Tommy's counts continue to drop. His hemoglobin has dropped 2 grams in the past 3 days. This deeply concerns us. We don't know where the blood is going, except perhaps he is having more rectal bleeding than is seen with the eye. Otherwise, we don't know the source. This would beg for a GI scope, but we've discussed this before with his doctor and she thinks it would make him bleed too much to risk it. With such low counts, we would have to agree. I am thinking of perhaps a tagged red cell scan could be done. This is a nuclear medicine test that would be done to see where the red cells are going, if anywhere, if he is bleeding. Otherwise, our question goes unanswered and our frustration is mounting. We would never win a patience contest with Job (and don't want to)! Anyway, Tommy's hemoglobin was down to 8.5 g/dl already (was 10.6 g/dl on Tuesday) and his platelets were 8,000. He did get transfused with platelets today. We feel like we're stuck in a revolving door with no chance of getting out! Help Lord!!! Tommy looks good and usually feels pretty good, for the most part, and that fools a lot of people into thinking all is well with him! We wish we could say it were true! We will still hold out for hoping that his second graft of donor cells has not failed. Please pray for us, especially for our precious son Tommy, through all of this! It is very difficult to deal with! We have not seen too many of our friends this past week. Michelle had spiked a fever and was getting a repeat CT scan of her lungs today (her website is www.pilink.com/page/michelle ). Chris who had his gallbladder out, and who has been here over a year now, is hopefully out of the hospital today or this weekend! It will be good to see them in clinic again! Thankfully, Stephen is home now from having dealt with such a serious illness, post-transplant. Baby Britton, we've heard, is back in the PICU with respiratory distress (www.pilink.com/page/thebritt). Please pray for her and for all of these children. Keep them on your hearts and in your thoughts each day. Many, many thanks for your love! "Blessed is the man who trusts in the Lord, and whose hope is the Lord. For he shall be like a tree planted by the waters, which spreads out its roots by the river, and will not fear when heat comes; But its leaf will be green, and will not be anxious in the year of drought, nor will cease from yielding fruit." Jeremiah 17: 7-8 AMEN!
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16 May 00 (Day T+159) Hi all! Am typing this in my sleep! Haahahaaa. Wish it were true, then I would have more time sleeping, which is a luxury around here! Had the Duke clinic visit again today, since it's Tuesday. This one was somewhat shorter than the others, which helps to get home before 10pm. Sue, Tommy's Nurse Practitioner, was there, but Dr. K. wasn't. So not much in the way of discussion today, or for the past 3 weeks for that matter. Next Tuesday's visit, if Dr. K. is there, will probably take all day, since everyone who has not seen her in the past 3 weeks will have a lot to discuss about their child. But then, we are used to, but have never enjoyed, the all day hauls! I don't believe I've ever met any parent who ever has enjoyed sitting around there for hours on end, just waiting. In the corporate business world, this inefficiency would never stand, but somehow in healthcare, it still prevails! Anyway, Tommy was so thrilled to see "Miss Sue" !!! He was quite the little character! Tommy's platelet count was low again and thus he needed another platelet transfusion. At first Sue told us he had a 10,000 platelet count, then they looked at his blood smear and it was more like 6,000. The difference is because of automated machinery, not being exactly accurate. When counts get this low they usually have to check them "manually" as well, therefore the difference in numbers. We got a little excited for a few minutes, but alas, it was not to be! His hemoglobin was good at 10.6 and his white count was 6.9. We've had to increase his magnesium dosage in his tube feedings again since he has been drifting downward for the past couple of weeks and his level is hovering at the low end of normal. His kidney function is great and his liver studies are pretty par for his course. Some have come down, some have gone up, just slightly, most likely from his medications. Thank you all for your continued support for us!!! 14 May 00 (Day T+157) Tommy is doing well today, especially since he got to see his Na-Na this afternoon!!! A special "Thank You" to Marsha, Charlie and L.V., for helping move "Grandma"!!! What a job!!! You are a bunch of Terrific (with a capital "T") friends! We love you and your very generous and self-less hearts!!! However, onto another topic that needs to be addressed: For whatever reason, there are some who would like to think that ventilating our emotions and frustrations on this web page after going through the transplant process is not allowable! Some believe that we "complain everyday about the work involved with caring for" Tommy and that we are not thankful just for the fact that Tommy has survived these two transplants! Well, let there be no misunderstanding about how we feel! We are, and always have been, very thankful for the way God has protected Tommy so far (and not just since transplant, indeed, from the very time of his birth!); that he has not had to be re-hospitalized or admitted to the PICU (Pediatric Intensive Care Unit) because of transplant complications. We have mentioned this several times on this web page. Since last August, when we first went down to Duke, we have known several children who have not survived and our hearts continue to go out to these families. We have hurt with them and for them. Also, we do not "complain" everyday on this web page about "medications to give, blood work to draw, IV catheter dressing changes," etc, this is an untrue accusation. We'll take credit for the clinic visits though, who wouldn't complain about all those hours spent in useless and unnecessary waiting!! Good grief!!! Although caring for Tommy is a lot of work because of his many special needs (due to his genetic disease, dyskeratosis congenita, which are in addition to his post-transplant related care needs), we still enjoy the blessing of having a son to care for and have since the day he was born, 2 months pre-maturely at only 2 lbs 6 oz. We know and can see and have seen how God has blessed our lives so very much and has answered many, many prayers for our Tommy every single day of his life! Therefore, criticism of this family will not be accepted, unless you've walked in our shoes, every minute, every mile, every clinic visit, every doctor visit, every inpatient and outpatient day, for the past 9 months, and those previously, and those to come! " But whoever has this world's goods, and sees his brother in need, and shuts up his heart from him, how does the love of God abide in him? 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. For if our heart condemns us, God is greater than our heart, and knows all things. Beloved, if our heart does not condemn us, we have confidence toward God." 1 John 3: 17-21. AMEN!!! 13 May 00 (Day T+156) Yesterday (Friday) was another long day trip to Duke!! Tommy received both a platelet transfusion and a red cell transfusion due to his low counts. Platelet count was 8,000 and hemoglobin was 7.4 g/dl. His white cell count was 4.3 k/ul. We left for Durham that morning at 8:30 am and got back home that night at around 9:15 pm. Tommy felt good today and had lots of energy as a result of the transfusions he got yesterday. Please pray for Tommy's donor cells to GROW and for his infections to clear up. 10 May 00 (Day T+153) Well, we survived another long, tiring trip to Duke yesterday. It was a pretty s-l-l-o-o-o-w-w-w process. Last week they had Tommy's platelets ready to go, but yesterday they waited on his lab results, which came back in about an hour, and then it took another 3-4 hours before he got his transfusion! That's a LONG time for a 5 year old to sit around and wait. It wasn't as if we had comfortable chairs to wait in. Some little plastic chair in an exam room for over 3 hours and by then Tommy was ready to fall asleep! OH BOTHER! As Pooh would say! Tommy's hemoglobin was 8.6 g/dl, his platelets were 10,000 (if we were still living in Durham we might have waited one more day), his white count was 5.3 k/ul, and his liver enzymes were rising some (probably from the drug voriconazole). We are already dreading Friday's trip when Tommy may have to have BOTH red cells AND platelets transfused!!! Hopefully not, pray that he doesn't need either of them!!! It just doesn't seem to pay to get up so early, be so tired from lack of sleep, just to have to wait forever at the clinic! I know I'm whining, but I'm good at it! It is very good to be home! Thank you to Michelle's mom, Cecilia, for being an encouraging support! This is a difficult road and it is far from over! She was a good shoulder to lean on yesterday! Didn't get to talk to Jenna and her mom, Kay, much as they were headed out the door! Jenna was doing so well, she needed not a thing, and they were done quickly! I know that's been a long time in coming for them! Tommy WILL be getting schooling at home from his regular teacher, Nancy, starting tomorrow! We'll see how it goes. Tommy will usually use ME as a distraction for not doing what he should be doing! I know school will be good for him, he has always loved it. Please continue in your prayers for Tommy and us. We are still in a "fog" as to what is happening with his donor cells, why his counts are not rising, and/or whether it just is a matter of more time! Okay, I'll say it: THE WAITING IS DRIVING ME CRAZY!!!!!! (insert scream here!) : ^ ) "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea, driven and tossed by the wind." James 1:2-6 AMEN! 8 May 00 (Day T+151) Hi all! Sorry for the lack of daily updates recently, but since getting home there is a great many more things that need attention (besides Tommy!) and we have little time to sit down and update as frequently as we had been doing. It is great not being stuck in a one room efficiency in Durham! And we definitely have not been bored! We enjoy updating, however it may not be as frequently as in the past. That is, perhaps not until we get a routine established and things cleaned up around here so it looks like a real home instead of a toy store or medical supply center! We still have to drive to Durham twice a week, and, in between, fit in work schedules and driving grandma around town (grandma does not drive!) It was GREAT to go to Bible study and worship Sunday! Thanks to grandma who watched Tommy, we were able to go together in the morning! Tommy was pretty wild being here at home. He got out as many toys as he could get his little hands on and had them scattered in just about every room in the house! So much for "cleaning". I think he figured he was going to be here only for a day again and I had to explain this to him. Friday was a difficult day going to Duke and back, and we were EXHAUSTED when we got home. We are wondering if this Enterovirus is haunting him again, since he was awake last night having frequent stools. The bleeding around his central line site stopped and we pray it won't start up again. We are trying to get things in order to have some homebound schooling for Tommy, but there are a few roadblocks here to overcome as well. Nothing comes easy, not even bone marrow test results! HA! Tommy's attending physician is still going to be making inpatient rounds again this week, so we probably won't be getting much chance for discussion again! So frustrating! Thank you all for praying for Stephen to overcome this difficult complication he suffers from. His family is grateful. We are so happy to hear of his improvement. Please continue to pray for Tommy to still have his donor cells, for them to grow and produce adequate amounts of red, white and platelet cells. Also continue in your prayers for young Stephen to overcome this illness. Be vigilant in your prayers for Jasmine, Jenna, baby Britton, baby Jacob, Michelle, Alex S., Chris, Yousef, and all the other children who have so bravely faced such devastating illnesses and life-altering treatment in their young lives. We would also like to ask your prayers for a young teen named Amber, who may have the same disease Tommy suffers from. She is going through a lot of testing right now. And we would also like to ask your prayers for a young woman named Melinda in Texas who found out she needs bone marrow studies done. God bless you all! "The heavens declare the glory of God; And the firmament shows His handiwork...The law of the Lord is perfect, restoring 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 meditation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer." Psalm19: 1, 7-11,14. Amen! 5 May 00 (Day T+148) It is great to be home!!! We are home!!!! We have been very, very, busy the past few days with packing, moving, unpacking, organizing, etc. Tommy really enjoys being home!!! He has been having some pretty good days lately. However, one issue which started our first night home (Wed. 3 May) was some bleeding (oozing) from one of his central line sites in his chest. Because of the bleeding, we have had to change the dressing every day instead of just once a week. Tommy really hates to have his dressing changed, especially as often as every day!! There has been less bleeding from the site today. The Bactroban ointment we are putting around his feeding tube site on his stomach appears to be working against the resistant staph bacteria (MRSA). We are still giving him the oral experimental anti-fungal drug called voriconazole to treat the candida infection in his gastro-intestinal track. This drug appears to be working well. Candida infections take a long time to clear up, so Tommy will have to be on this drug for a while. Today Linette and Tommy's "Na-Na" took him to Duke to get a platelet transfusion and to be seen by Dr. Kurtzberg. It takes about 2 hours 30 minutes to travel to/from Duke, plus the several hours spent there make for a very long and tiring day. His platelet count was down to 9,000. His hemoglobin level was 10.6 g/dl and his white cell count was 7.1 k/ul. Thanks for the prayers for Stephen Dennison!!! He is now out of the Intensive Care Unit and is off oxygen. Please continue to pray for him as he still has a long way to go. His webpage is: www.caringbridge.com/page/stephenspage . Also, thanks for all the prayers for Tommy!!! 2 May 00 (Day T+145) YIPPEE!!!!! Today has been our "great day in May!!!" We have been given the OK to go HOME- home, to our REAL home in Virginia!!!!!! YIPPEE!!!!! I want to shout and scream. Got a lot of pent up everything inside and it will come out probably when we get home!!! Tommy had to get a platelet transfusion today; his platelet level was 8,000. At least we are making it 4 days without any major bleeding like we have had in the past...and that is a hopeful sign. The doctors say that with new, young platelet cells, there is less tendency to bleed even though the platelet count may be quite low. We hope this means he still has donor cells in his body. We will still not know the outcome of all of this for several more weeks or months. Still such a long time to wait. But the wait will be easier, hopefully, being at our own home. We have had absolutely no energy tonight, but somehow, we have packed up just about everything. Tom has even loaded some stuff in the cars. We would never have fit everything in ONE car. No WAY! It will be very tight getting everything to fit into two cars!! Tommy has been VERY wound up since we were told we could go home to Virginia. He was practically running, as fast as his legs could carry him, out the door of the clinic. This was quite a feat, considering he was drugged from the benadryl he received before his platelet transfusion and he had a belly full of food for lunch, making him very sleepy! He kept saying,"Nana", so we know who is at the top of his priority list to see!!! Nana will be excited as well. Tommy has been switched to oral Voriconazole, so this drug will not be keeping us here, as it did for IV infusion. Dr. Kurtzberg also nixed the idea of any other drug to treat his MRSA (resistant staph) bug around his PEG (feeding tube) site, since it is localized and not a systemic infection (like in his bloodstream or lungs). The Bactroban ointment is supposed to work against this organism, so we will have to use it more frequently. The drainage around the tube has lessened as well, so we feel comfortable with using just the Bactroban to treat this infection. We will still have to be VERY careful exposing Tommy to anyone, since he has virtually no immunity against anything! It has been exactly NINE months, less a week and a few days, that we have been down here. We came to Duke on August 2, 1999! An incredible experience and a journey which is not yet complete! We will have to travel here to Duke twice a week...Tuesdays and Fridays, unless other issues come up and we need to come sooner. Luckily, it is not a very long drive. We have read today's update to Stephen's webpage and he is stable in the ICU today...a good thing! They feel this experimental monoclonal antibody drug may be working for him. He is not on a ventilator, and that is also very good news. Please continue to pray for Stephen, his mom Lisa, and his family. His webpage is: www.caringbridge.com/page/stephenspage . We cannot tell you how very important and encouraging it is to get notes from others who are praying for your child. When transplant becomes this terribly difficult, it is a great source of hope and comfort to look at and read. The burden seems a little bit lighter to bear, so we encourage you all to sign his guestbook (it's much better than ours!). Thank you all so much for your prayers for Tommy, for Stephen and all those we have put before you so many times. " Can a woman forget her nursing child, and not have compassion on the son of her womb? Surely they may forget, Yet I will not forget you. See, I have inscribed you on the palms of My hands;" Psalm 49: 15-16a AMEN! 1 May 00 (Day T+144) Well, our "Buckaroo" went to clinic again today. No surprise, I guess. His hemoglobin level was less than 8 g/dl, (7.7), so another red cell transfusion for him. His platelet count was 14,000, so most likely another transfusion of platelets tomorrow. He is oozing a bit of blood from the insides of his cheeks in his mouth. We seem to live at the "clinic." We might as well have our own private suite there! Good news on the spleen ultrasound, it was "normal". Normal size, normal function, no overfilled organ chomping on Tommy platelets or other cells. Thank you, God! Now if we can clear up his infections, perhaps we could get a clearer picture of what is going on here with his cell production. It will take longer, however, since the "staph" bacteria found around his feeding tube site has now been further defined as a "resistant staph" (MRSA...methicillin resistant staphylococcus aureus"). This means this bacteria cannot be killed by the usual antibiotics. The Keflex he was started on last Friday is useless against this bacteria. In fact, this bug is resistant to almost ALL antibiotics typically used to treat it. This is what happens to people and organisms that have received a lot of antibiotic therapy; the bacteria find a way to become immune to the antibodies, so it mutates and lives. This is a common occurrence in hospitals. Since Tommy's infection is at his feeding tube site, "contact" precautions are all that is needed, i.e., very good handwashing and the use of gloves. Seems that his white count has taken a hit today as well, 4.3 k/ul, spiraling downward, possibly from all this infection business. Just talked with Sue, Tommy's primary nurse practitioner. She stated that we will visit Dr. Kurtzberg in a room at the hospital tomorrow just outside of the transplant unit (they won't let him come into the unit as an outpatient with this bug). This is so that they can see Tommy themselves, since she and Sue are making inpatient hospital rounds on the children's bone marrow unit all this week. This means we we will not see them in the clinic tomorrow, so we will have to make an extra trip to the hospital. We don't mind. I know Tommy won't mind. He is such a social buckaroo. He gets so excited going there. He loves all the attention he gets. In fact, all the children get major attention when they make an appearance on the unit, so Tommy drinks it in! Sue talked with Dr. Kurtzberg about the staph infection. Dr. Kurtzberg thinks that since it is localized to the peg tube site, we may be able to go with a drug called "Rifampin" and continue to use an ointment called "Bactroban" around the site as well, which can be effective against this organism. Tommy is very tender at his PEG tube site from some tissue that has grown up around it (granuloma tissue) and which needs to be "burned off" with silver nitrate sticks. This granuloma tissue is an occasional problem for Tommy that has happened to him in the past. Now getting rid of this excess tissue probably will not happen until his infection clears and he has an adequate platelet level for the GI (gastro-intestinal) nurse to do such a task. They have very good pediatric GI nurses down here at Duke. We have been impressed with them. They are so good that they can change Tommy's tummy tube, which has to be changed every few months and when he grows, without him hardly knowing what happened! Unlike what we have gone through back in Virginia: kicking, screaming, fussing and fighting! They are so quick and try to be very non-threatening to the kids, it's great! Takes a lot of stress off of us, too. So, tomorrow we will have to see what Dr. Kurtzberg says about all of this and the possibility of making our way home. It is her decision to make. On another note, we are very concerned about Stephen Dennison and his family. Stephen has developed a very serious post-transplant complication, and is now in the pediatric Intensive Care Unit up in Delaware. He went home in February and had been doing marvelous since then. Now he is fighting to breathe. He has developed a lymphoma-like cancer in his lungs and lymph nodes causing thick, tenacious secretions that threaten to block his airways. This is due in part from the Epstein-Barr virus (a.k.a. "mononucleosis") that he apparently had exposure to prior to transplant. They are treating this with some experimental "monoclonal antibodies" that are suppose to kill the "bad" proliferating lymphocytes without killing his normal cells or donor graft. Chemotherapy could work, but it would kill his normal cells too, and he would possibly lose his donor graft. If anything is "unfair" in this world, it is children who have been through so much, who have come such a long way, only to be knocked down again by something like this. It just makes us want to cry. Please pray fervently to the Lord for Stephen, that He would heal him; that he may live to have a childhood to enjoy with his family, that he has had too little of. " Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." John 14: 27 Amen! 30 Apr 00 (Day T+143) Tommy had a pretty good day today. He did not have a lot of energy, probably due to his hemoglobin level getting low. Request your prayers for Stephen Dennison and his family. Stephen is 8 years old and received a cord blood transplant back in Oct 99 when Tommy was going through his first transplant. He entered the Intensive Care Unit (ICU) today because of trouble breathing. He has a very serious post transplant complication. The doctors think it is a lymphoproliferative disorder which is like lymphoma, cancer of the lymph nodes. Please pray for this very special family we have come to know and love. |
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29 Apr 00 (Day T+142) Tommy had a good day today. We are praying that the experimental anti-fungal drug and the antibiotic drug he is getting will clear up his infections. Also, we are praying that his spleen is alright and that his donor cells will GROW and produce platelets, red cells, and white cells. We truly appreciate all the many prayers for Tommy. Please also pray for Stephen, Jasmine, Michelle, Chris, and Alex S. who are all struggling with post transplant complications. 28 Apr 00 (Day T+141) Tommy had to be given a transfusion of platelets today because his platelet level was only 5,000 this morning. His hemoglobin held at 8.6 g/dl and his white cell count was 6.3 k/ul. Also, we learned today that the culture of his gastrostomy button (feeding tube site) in his stomach came back positive for a bacterial infection, so they have started him on an antibiotic (keflex) which he gets every 6 hours. This afternoon they performed an ultrasound of his spleen. Tommy was very nervous about it but after he realized that it was not going to hurt he settled down and did well with the procedure. Linette has gone home to work this weekend and will return to Durham on Monday. Thanks for all the many prayers for Tommy and the other children here who are going through this long and difficult process of bone marrow transplantation. 27 Apr 00 (Day T+140) Hi everyone!! Tommy had a good day today. A fair amount of energy despite dropping counts. It doesn't make much physiologic sense, but everytime his platelets get real low, he becomes pretty lethargic, not much energy; something one would expect with a drop in hemoglobin, but this is a "phenomenon" other transplant parents have talked about as well. He is having some blood in his stools that has started since Monday or Tuesday. Not sure if it is from a superficial skin fissure or something else. Today Tommy's hemoglobin was 8.6; his hematocrit was .27%, and his white blood count 6.3; His platelets are hovering at 18,000 ! A good thing for being 3 days from the last transfusion. I suspect he may need platelets tomorrow, but we can always hope that he will not drop so rapidly if he is making his own cells. We are still hoping that his lack of rise in cell counts is from his ongoing yeast infection in his GI tract. We have seen this happen in other transplant patients, even with good cell counts, when they get an infection. So, we are still holding out hope for eventual good news. The amount of patience to possess is incredible and almost ridiculous, to one's breaking point. Tom will return from work tomorrow and I will have to go back to VA to work this weekend, which will make for a hectic day. Besides the travelling, Tommy is scheduled for a spleen ultrasound at 3pm tomorrow, so pray for him!! He gets so upset at any kind of test or procedure, but if we have the right kind of technician, he will do okay. They are checking the spleen to make sure it is not getting enlarged, which could be where his cells are getting eaten up, but hopefully this will not be the case. They wanted to get this done while we were still in town. I think Dr. Kurtzberg was tired of us asking if this could be where his cells are going. I don't think she believes it to be true, but it is something to rule out. Please pray for his spleen to be normal. (We have Jordan Wagstaff and her splenectomy in the back of our minds.) We will check chemistries and another blood count tomorrow. Pray for his platelets tomorrow to be above the 10,000 mark still !!!! Thank you Margaret and Tom Eudailey from the Durham church!! You have been a constant, steady source of support for us. We could tell when they first met Tommy (in the hospital), they were a bit nervous (who wouldn't be?!), but they have continued to come visit while we were inpatient and even now as we are outpatient and, to their credit, they have gotten very comfortable with our son. Tommy loves to see them as well ! It breaks our boredom. They just visit with him (and us) and enjoy him and it makes a big difference in our lives! So, thank you, so much Margaret and Tom, for your love and support! We are ever grateful! You are true Christian examples of the love of Christ! " O Lord, You have searched me and known me. You know my sitting down and my rising up; You understand my thought afar off. You comprehend my path and my lying down, And are acquainted with all my ways. For there is not a word on my tongue, But behold, O Lord, You know it altogether. You have hedged me behind and before, And laid Your hand upon me. Such knowledge is too wonderful for me; It is high, I cannot attain it.....I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well...Search me, O God, and know my heart; Try me, and know my anxieties; And see if there is any wicked way in me, And lead me in the way everlasting." Psalm 139: 1-6,14,23,24. AMEN!! 26 Apr 00 (Day T+139) Don't know how I did it, but left one very special little girl out of our write up yesterday! Jasmine!!! She has been struggling with a good number of viral infections since early this year. She has been in and out of the hospital for usually one day before being readmitted with high fevers. We saw her at clinic yesterday and she had been out for THREE days as outpatient!!! A new record!! However when we read her webpage last night, she had gotten another fever; don't know anything more than that. Hopefully she is still out of the hospital and these fevers will subside. If you wish to view her webpage the address is: www.caringbridge.com/nc/jasmine. Jenna's website is : www.caringbridge.com/page/jennaswebsite ; Jordan and Thomas' web address is: www.caringbridge.com/page/jordanthomas. We have met so many children and their families along the way, it is often difficult to remember them all. Sometimes I have a hard time remembering just one other child, but God knows them all by name and He watches over them each day, all day. We would also like to give our heartfelt thanks to Amy Miller (Tommy's "Best Buddy" throughout his hospitalizations) and Mike Perry (a crazy-for-Tommy volunteer) who have been so good to Tommy and us throughout our stay here!! You have both made life here easier to endure because of your willingness to help and your caring attitudes! Please continue to pray for these transplant children, who know the love of Jesus, who ARE the love of Jesus here with us! " Therefore I also, after I heard of your faith in the Lord Jesus and your love for all the saints, do not cease to give thanks for you, making mention of you in my prayers: that the God of our Lord Jesus Christ, the Father of glory, may give to you the spirit of wisdom and revelation in the knowledge of Him, the eyes of your understanding being enlightened; that you may know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the exceeding greatness of His power toward us who believe, according to the working of His mighty power..." Eph 1: 15-19 AMEN!
25 Apr 00 (Day T+138) Hi Everyone!!! Today was another "Super Tuesday" clinic visit day. Spent about 5 hours there for a one hour IV drug infusion and about a 30 minute session with Dr. Kurtzberg! The new clinic IS pretty and a lot cleaner, but still grossly inefficient and unproductive in processing patients through the system. Well, Tommy did not have any blood counts done today since they did them yesterday and he was transfused yesterday. The next check of his blood counts will be Thursday. As of today Tommy has been completely weaned off of steroids!! Tommy had a culture done from the skin around his gastrostomy button (stomach feeding tube) since there was some greenish drainage around it. They also re-cultured a whitish area he's had on the upper palate of his mouth (? candida there), and we are going to re-culture his stool tomorrow to check again for viruses and fungus to see if we have made any progress against these infections. Still no bone marrow studies back from the NY Cord Blood Center. It has now been exactly 12 weeks since we had it done. Now standard wait time is about a month at max, we are of course way beyond this point. Dr. Kurtzberg is telling us that this is good since they have seen donor cells, but it is taking a long time for them to differentiate them and they will not, according to her, give out a report until it the study is completely finished. So, we are still being strung along on this long ride. We were told today that his immune studies from day T+103 show that he has virtually no immune function present; in fact, he is at a lower point than he was pre-transplant! This is incredible, but she feels it is also a good thing in a way; that being: if he still has donor cells growing or trying to grow in his marrow, then his own immune system will not be able to attack the new cells and kill the transplant. The bad side of this is that he is very susceptible to ANYTHING, especially viruses. His weak immune system could explain why this candida infection is so hard to get rid of in his GI tract. He will most likely be on the Voriconazole a very long time, although not in IV form. After next Tuesday, the plan will be to switch him to an oral form that will not require getting doses from the pharmacy each and every day, like the IV form. So barring any major problems, we may be looking to getting home soon. We most likely will still have to come back to Duke at least twice a week. If Tommy continues to have problems with his blood counts, especially his platelet levels, we will probably be coming down more often or staying down here longer. We saw a lot of our transplant friends while we were in clinic today! Jenna looked GREAT! Lots of hair now! Talking and smiling and joking around. Her parents, Kay and Ray, are a great source of comfort to us during all of this mess. They KNOW the pain of waiting, the fear of uncertainty and of not knowing, because they have been on that side of it themselves. Michelle is looking good although she has not felt very good for a week or two. They finally found possibly a fungal infection in her sinuses and lungs. She is on the nasty IV Amphotericin B now. (The "shake and bake" drug we call it...it causes nasty chills, fever, and shakes in a lot of children). She is having a sinus biopsy tomorrow, so keep her in your prayers. P.G. looked GREAT! We even saw Jordan and Thomas Wagstaff and their mom, Beth!!! It was so GOOD to see y'all!!! The kids looked great and we had a good visit with Beth. Both Jordan and Thomas had to get red cell transfusions today. Chris is still in the hospital. Heard that Alex S. has a positive nasal culture for "adenovirus". He has had a lot of respiratory infections for a month or two now. Stephen, we didn't see, but talked to Lisa, his mom, on the phone and they did a bronchoscopy on him today, removed a lot of thick mucus plugs; he still is in the hospital in NJ with high fevers from his pneumonia and blood infection. Pray for Stephen and Lisa. They had been doing so well. Stephen is about 5 1/2 - 6 months post-transplant and has had great blood counts, but full immune function to fight off viruses and bacteria, which all of us healthy people take for granted, does not return for a year or more. So even getting to the "going home" point doesn't put a transplant patient at any less of a risk. I pray that we will have the faith it takes to carry on through this struggle each day. It sometimes seems like an insurmountable task, but we are reminded through the Bible that God's power is awesome and incredibly more powerful than we could ever imagine!! I hope to take refuge in that fact. [To our friends at home, the article on Tommy in the Petersburg newspaper was grossly inaccurate and the quotes were incorrect and hardly recognizable sometimes. We are sorry we agreed to do it, but it was with the intention of helping out Tommy. It embarrasses us that it was done in such a sloppy manner.] " But the Lord is faithful, who will establish you and guard you from the evil one. And we have confidence in the Lord concerning you, both that you do and will do the things we command you. Now may the Lord direct your hearts into the love of God and into the patience of Christ. " 2 Thess 3: 3-5 " 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 24-25. AMEN! 24 Apr 00 (Day T+137) Tommy was given another transfusion of platelets today because his platelet count was down to 8,000. He was just transfused with platelets on Friday, 21 Apr. His hemoglobin level was 9.5 g/dl and his white cell count was 7.8 k/ul. Tommy had a pretty good day today. We are praying that this experimental drug (voriconazole) is working to clear up the candida infection in his GI track and that his counts will start improving. Tomorrow he will be seen by Dr. Kurtzberg, his primary physician. Please continue to pray for Tommy and all the children here who are going through this bone marrow transplant process. 23 Apr 00 (Day T+136) THANK YOU, LORD!!! We ALL went HOME, home for 24 hours (from yesterday afternoon to this afternoon)!!! YIPPEE!!!! Oh so sweet it was! An impulsive thing, it was! We were going to be stuck here because of Tommy's IV medication. It is only stable for 24 hours after it is mixed, so there is no way to go home for the whole weekend. So, we just left for a day! IT WAS GREAT!!! No place sweeter than HOME home! (For all you non-transplant world members, the lingo "HOME home", means one's REAL HOME, not some outpatient hospital "home" around here in Durham)!! Actually got to go to worship today at our home congregation while Tommy's Nana watched him!!! That was great! I haven't been there since November!! Was tempted to fill out a visitor's card. Anyway it has been a good morale boost. Tommy was SO excited when we got home, he went from room to room, digging toys out of the dozens of bags and boxes stacked around the house! He didn't know what to play with first! Then he wanted to get on the computer and play some of his kiddie CD-ROMs. His Nana came over to see him and he was in total bliss by then! Even more so when she came over to see him again this morning! Tommy was very good at stalling, trying to play everything and do everything before it was time to leave to return to Durham! He tried to keep us from packing by constantly yelling for us! He is some kid! Thank you our brothers and sisters in Christ for loving us so much; for your wonderful hugs! It will sustain us more than you know! " Therefore if there is any consolation in Christ, if any comfort of love, if any fellowship of the Spirit, if any affection and mercy, fulfill my joy by being like-minded, having the same love, being of one accord, of one mind. Let nothing be done through selfish ambition or conceit, but in lowliness of mind let each esteem others better than himself. Let each of you look out not only for his own interests, but also for the interests of others. Let this mind be in you which was also in Christ Jesus, who, being in the form of God, did not consider it robbery to be equal with God, but made Himself of no reputation, taking the form of a servant and coming in the likeness of men. And being found in appearance as a man, He humbled Himself and became obedient to the point of death, even the death of the cross. Therefore God also has highly exalted Him and given Him the name which is above every name, that at the name of Jesus every knee should bow, of those in heaven, and of those on earth, and of those under the earth, and that every tongue should confess that Jesus Christ is Lord, to the glory of God the Father." Phil 2: 1-11 AMEN!!! 21 Apr 00 (Day T+134) Tommy received a transfusion of platelets today because his platelet count was down to 10,000. His hemoglobin level was 10.0 g/dl and his white cell count was 9.4 k/ul. Tommy slept good last night and felt pretty good today. His daddy returned this afternoon from working a couple days back home in Virginia. Please pray that the experimental drug Tommy is now receiving will quickly clear up the candida infection in his GI track and that his donor cells will GROW and produce new platelets, red cells, and white cells. Also, please pray for Stephen Dennison and his family. Stephen is 8 years old and received a cord blood transplant back in Oct 99. He is in the hospital back home with a blood infection (staph aureus), pneumonia, and bad sinusitis. 20 Apr 00 (Day T+133) Hi everyone! More of the same drudgery today. I just feel so tired today. I guess this pounding headache that I've had all day doesn't help that. Tommy likes to manipulate me the best he can when daddy is gone. He does a good job, but I was not in the "mood" today. He is very skilled at manipulation techniques; probably could write a book, if he could write. Anyway, Tommy's hemoglobin was 7.4 today, so off to the clinic for a transfusion of red cells. He really perks up after those little babies are in him. It's like night and day. This morning he was just laying around, not much energy to even stand up and watch TV. Luckily, for me, he has finally passed out and is asleep. I would like to be there too, but too many drugs to still give and another feeding to go. Platelets today were 24,000, so maybe we may be able to hold out til Saturday. His white blood cell count was 7.8. We will do some chemistries tomorrow: electrolytes, liver and kidney function tests,& a magnesium level to make sure this new drug is not adversely affecting his liver or kidneys. It is known to elevate the level of immunosuppresive drug in his system that he is on, so those levels will be checked more often as well. Had an interesting call from a newspaper reporter from our hometown area. She wants to write an article about Tommy. Members from our home church congregation are putting together a softball tournament to raise funds for Tommy's dynavox. This is a communication device to help Tommy learn language skills and communicate with others around him. It is very expensive and our insurance won't pay for it. (There is more on this under the"Tommy Burnette Fund" link on this page). Anyway, Tom and I are hoping it will be an accurate article about Tommy, his disease, and transplant course. We are very grateful for the help we have received through the past months and years! Thank you Christina and Marsha for all your efforts! You truly are the love of Christ! " '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.' .....And the Lord added to the church daily those who were being saved. " Acts 2: 36-39, 47b AMEN! 18 Apr 00 (Day T+131) "Whatever I tell you in the dark, speak in the light; and what you hear in the ear, preach on the housetops. 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. Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father's will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows." Matthew 10: 27-31 Amen! Where shall I begin?? The past two days have been a bit hectic and confusing. We were pleasantly surprised on Monday to hear that Dr. Kurtzberg was able to obtain the investigational (experimental) antifungal drug, voriconazole, for Tommy. She is a remarkable doctor with great persuasive abilities!! Tommy was started on this IV drug today which he will get every 12 hours. The IV drug ABLC has now been stopped. We had also been trying to contact home health care agencies in Virginia to provide the home care, supplies, and IV infusion services we will need when we get back home. Long story there....and it gets more complicated when the only agency we found that provided all the services we needed for Tommy told us they would not handle this new experimental drug voriconazole! Ha Ha! Some cruel joke, isn't it??? Well, it's no joke, so we will have to stay here in Durham for at least two more weeks, maybe longer. We were also having trouble setting up transfusion services for Tommy back in Virginia because he requires special "irradiated" blood products. We were hoping to go through our pediatrician for these services, but this has not worked out. We are also rather uneasy with taking Tommy home and only checking his blood counts twice a week. He drops his platelets rapidly after 3 days, and by the 4th day, has very few platelets left. For example, Tommy received platelets Friday, by today (the 4th day) his platelet count was only 3,000!!! YIKES!!! The GOOD thing is, he didn't have any bleeding!! (WHEW!) We saw several transplant children today at the clinic that were doing well...Jenna, P.G., Christina, Michelle, and Daniel. Please pray for Chris, who is back on the transplant unit and we heard had to have his gallbladder removed. Now there is a lesson in total love and patience! Chris and his dad, Ed, have been here for 14 months!!! Chris suffered terrible Graft-Versus-Host (GVH) complications and was finally making a good recovery. Now this! They used to live in California, but Ed has since lost his home and is in danger of losing his job. He is a widower and has been a totally devoted father, never minding the ups and downs of transplant! If I could only have one-tenth as much grace and patience as Ed! They are heroes in their own right! Thank you Lord for them. Thank you Lord, also, for June, Sue, Dr. K., (you too, Mary T.!), and all the staff at Duke who have done so much for Tommy and us! We are thankful for their knowledge and dedication to their children. It shows in everything they do! |
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16 Apr 00 (Day T+129) Tommy had a good day today. He is really enjoying his grandma being here this weekend!! The weather was nice today so we went for a ride and stopped for a little while at a pond and watched some ducks and geese. Tommy has not had any labs this weekend so we do not know what his counts are today. The pattern recently has been for his platelet count to drop rapidly so we are watching him carefully for any signs of low platelets. We are praying that he will not require any platelet transfusions before his next scheduled clinic visit on Tuesday, and that he will start making enough of his own platelets to not require transfusions. Tomorrow Linette will be back from working this weekend and grandma will return home. Please continue to pray for Tommy's donor cells to GROW and for his infections to clear up quickly. 14 Apr 00 (Day T+127) Tommy received a transfusion of platelets today because his platelet count had dropped to 4,000. His hemoglobin level was 9.6 g/dl and his white cell count was 4.3 k/ul. We met with Dr. Kurtzberg today. She thinks we need to stay the course and continue to treat the virus and yeast infections while keeping an eye on his kidney and liver functions. She said that some fungal infections can take several months to clear up and that we may be looking at two to three more months of the IV ABLC (Amphotericin B Lipid Complex). She thinks that soon we could return home to Virginia under a plan where we would bring Tommy to the Duke clinic once a week (every Tuesday) for his regular checkup and to get any transfusions he might need, and then every Friday we would have his blood counts checked, and transfusions given if necessary, at a facility in the Richmond area. This plan would enable Tommy to receive transfusions every 3 to 4 days if necessary and allow us to move back to our real home in Virginia. There are some details that will have to be worked out but it looks like a workable plan. Tommy was very happy and excited to see his grandmother (Lillian) today!!! She will be here through the weekend to help out. Linette has returned home to work this weekend. Please continue to pray for Tommy's infections to clear up and for his donor cells to GROW, GROW, GROW!!! 12 Apr 00 (Day T+125) "Therefore, as the elect of God, holy and beloved, put on tender mercies, kindness, humbleness of mind, meekness, longsuffering; bearing with one another, and forgiving one another, if anyone has a complaint against another; even as Christ forgave you, so you also must do. 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." Col 3: 12-27 AMEN! Just trying to get a better frame of mind today. Tom is home trying to get some work in; it is probably better we are separated for now, although I always miss him when he is not around. Thank you, kind and encouraging souls who have bothered to e-mail or call us. You are our "family" of support and we could not keep up our strength without you. Thank you Edgehill Church of Christ for loving us so much! We miss you so! You are the love of God! Praise be to God for you! The Lord will not fail you, either. Thank you Lord for the experiences you have placed before us all these weeks, months, years. Thank you Father for the love of Jesus in a little boy named Tommy! 11 Apr 00 (Day T+124) All we can say here today is that we are struggling....REALLY STRUGGLING. Struggling with dealing with too many unknowns, not having any kind of bone marrow results to give us an indication of good things or bad, a nephrotoxic antifungal drug that is starting to take a toll on Tommy's kidneys, and something making his liver function studies rise as well. No one has any answers!!!!!!!!! If he is producing new cells, it isn't showing in his blood work, because he still is requiring frequent transfusions....way too frequent for this many days post-transplant. They tell us these infections could drop his counts. Okay. This antifungal drug, ABLC, which Tommy has been getting for over four weeks now that is supposed to be clearing this yeast (candida) infection in his GI tract doesn't seem to be making him feel any better. And, last night we learned that Tommy cannot be started on a new experimental (not yet FDA approved) antifungal drug because per laboratory testing his yeast is supposedly still "susceptible" to the ABLC drug he has been getting. The FDA only allows this experimental drug, voriconazole, to be given in compassionate cases when it can be proven that ABLC is not eradicating the specific yeast infection. Tommy is still throwing up each day, having some diarrhea, and cramping pains at night. (To us this drug is NOT really working). On and on it goes! We are so tired of being here! We are tired of living in this small space and staring at these four walls! We are tired of the massive amount of knowledge these doctors possess, but the lack of answers they give us. We are tired of being alone! Tommy misses his friends and family, and so do we! We would like to have a little semblance of some kind of return to normality living in our own house!!!! Can you sense that we have felt very stressed today??? Tom and I have been feeding off of each other's "upset-ness". (This is NOT GOOD when Tom starts feeding off me and flys off the handle as easily as I usually do; he is always so calm and rationale! NOT TODAY!). I have been trying to remember the verse in James that talks about "the wrath of man does not produce the righteousness of God"( Js 1:20), but it is hard, so very hard, to do today! Tommy's platelets were 8,000 yesterday morning and since he had no bleeding anywhere we decided to play it brave and not transfuse platelets and wait to see what his counts would be the next day (today). Well, it wasn't a good decision...by 7pm that evening (Monday) we had to call someone about Tommy...he had a huge clot in his mouth from bleeding from his tongue. Since the clinic was already closed they instructed us to take him to the pediatric bone marrow transplant unit at the hospital for a platelet transfusion. That platelet transfusion didn't do him a whole lot of good, as his platelet count this morning, less than 12 hours later, was already down to 44,000. Platelets have a very short life, but Tommy's platelet count used to rise into the 100,000s following a transfusion and they would last a week or two. Now, since mid-March we've had to have him transfused with platelets every 4-5 days. We are so very frustrated and concerned and it overwhelms us today. Please pray for us and our son this day. "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. Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. 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." 1 Peter 5:6-10 AMEN!! 8 Apr 00 (Day T+121) Tommy received a transfusion of red cells today because his hemoglobin level was down to 7.6 g/dl. His platelet count today was already down to 29,000 even though he received a platelet transfusion just two days ago (6 Apr). His white cell count was down to 4.3 k/ul. Tommy is still fighting a viral infection (entero virus) and a yeast infection (candida parapsilosis). Both of these infections are in his gastro-intestinal track. The entero virus is being treated with IVIG given through his feeding tube and the candida is being treated with IV ABLC (Amphotericin B Lipid Complex). The candida may be have become resistant to the ABLC. If lab tests show this to be the case then Tommy will be started on an experimental drug called Voriconazole. Please continue to pray that these infections will clear up quickly and that Tommy's donor cells will GROW, GROW, GROW. 6 Apr 00 (Day T+119) "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." Ps 100. Amen! Hello everyone! After a restless and mostly sleepless night, we had a pretty decent day. Had to run to clinic to get another round of platelets. Tommy's platelet level was 8,000 today; his hemoglobin 8.3, and his white cell count 6.3. Luckily they did not have a lot of patients today, as they are trying to pack up and move into their brand new children's clinic located right next to the hospital. It will have all children's services under one roof! The bone marrow and hematology/oncology services are supposed to be the first to move this weekend, so this next week will be interesting and probably confusing for both staff and patients! Always some bugs to work out! Daddy is back to work and we miss him terribly. He is a great help to us and the BEST daddy in the world! Not to mention the best unregistered nurse in the states of NC and VA!!! Tom has taken the medical/nursing "bull" by the horns and has tackled it with great skill and proficiency. He has done so much research on this disease, dyskeratosis congenita, and cord blood/bone marrow transplants in relationship to it, that he amazes the physicians and the staff (and ME) with his knowledge base and the ability to ask detailed, technical questions. I'll never forget the look on Dr. Kurtzberg's face when we had our pre-transplant, pre-admission conference with her and he asked her such technical questions that even she was impressed. I love you honey and so does Tommy, very, very much! Tommy has gotten to be a real "Daddy's boy" lately. Usually it has been "Mama, mama, mama" all day long, every day...now it's daddy, daddy, daddy! It took Tommy 5 years before he could get the "d" sound out and now it's been worth all the waiting!!! We are hoping to meet with another family who found out their teenage daughter most likely has Dyskeratosis. They have travelled to Duke this week. Somehow they found our website and we have been in touch. It is good for us to be able to share our knowledge and experiences with others who need it. Unlike more common childhood diseases, like leukemia, information and support for this disease is just about nonexistent. We hope we can just be able to take the edge off the anxiety and fear and panic that are attributes of a rare disease like this. It took us 4 years of constant searching for answers before the many specialized physicians at Johns-Hopkins in Baltimore gave us confirmation of this disease and all of it's awful symptoms. Please continue to pray for Tommy's donor cells to grow, especially those red cells and platelets!!! GROW CELLS GROW!!!!!! Thank you all for your continued prayers for us. We pray for YOU too everyday! |
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4 Apr 00 (Day T+117) "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 Hi all! We have some very good news today!! Tommy's CMV DNA blood test repeated last Friday 3/31 (before receiving any treatment for the previous CMV positive blood test done on 3/27) was NEGATIVE!!!! This more than likely means the test done on 3/27 was a false positive, especially since he has been negative all along. The test result on 3/31 was more in line with the numbers he has been having for the past weeks & months. This is definitely a great answer to a great number of prayers on Tommy's behalf and, as the scripture above describes, we have a great love for all of you who have raised this issue before the Lord, our God, and asked him to take this away from Tommy. We are so grateful to God and to you, who have petitioned Him on our son's behalf. Words cannot describe such relief in our hearts from such a burden. Thank you ever so much. We are also thankful to you again for your prayers on behalf of the Wagstaffs: Mike, Beth, Jordan & Thomas, who are planning to return to their home sweet home in the mountains of NC this week! Jordan's white counts, platelets and all her numbers have been normal ever since her spleen came out! Thomas is recovering well and is holding his blood counts pretty good too. Your prayers have been a great source of comfort for them. That is probably the only thing that keeps transplant parents sane and lessens the immense anxiety related to this whole nightmare. Jenna from Chesterfield, VA is improving also. She is more talkative, more animated, eating a little bit more, and she looks really, really GOOD! Her white counts and platelets are rising (it has taken them a long time to climb; I'm sure Kay, her mom, would say "forever".). It is so good to see progress in transplant patients that have had such a fight for weeks and months. It is good to see them every Tuesday. It is a special "family" (transplant) bond we share. There is also a girl named Jasmine who has had a tough time since January. She is finally feeling good and may be out of the hospital this week! There are so many to name: baby Britton, Chris, baby Gina, P.G., Maddy, Alex S., Alex M., baby Jacob, Christina, Michelle, Joy, Stephen, Kyle, Tre'Quan, Becky, Brooke......so many heros to add to this list. We implore you to think of them often and pray for them. We especially ask that you all pray for the Thatcher family. Our hearts are very saddened with the news that their teenage son, Justin, died suddenly and unexpectedly this afternoon. He had received a cord blood transplant this past February and had been struggling for a long time with serious complications. Justin was a very special and courageous young man who was a great inspiration to everyone. His web page is at: www.pilink.com/page/justinspage/ . I would like to finish this update by telling you about Tommy's day. He has had a good amount of energy despite his dropping hemoglobin, 8.3, and platelets, 24,000. His white cell count dropped to 7.0, most likely from the nasty ganciclovir, that we will no longer have to give him. Nor do we have to give him the IV Cytogam!!!!!! YEA!!!!!!!!!!!! Some of the 100 day blood studies show that he is making new red cells, but whether they are his own cells or donor cells is still in question. And don't even ASK about the bone marrow aspirate or biopsy studies done waaaaaaaayyyyy back on 2/1/00. No where in sight yet for answers. All we know is they are doing more specific testing (DNA amplifications) to identify the donor cells that they have seen. Nowhere in this transplant life is anything a given or a "for sure". One day you could have all donor cells, and the next month you may have none. It is a fragile world to live in and one that let's us know who really holds the power of life in His hands! All we can ask for is His mercy and grace to live out each of these days as He would have us to live. 2 Apr 00 (Day T+115) Tommy received a platelet transfusion today because his platelet count had dropped to 8,000. His hemoglobin was down to 8.7 g/dl and his white cell count was 9.1 k/ul. One of Tommy's stool cultures from 27 Mar came back positive for "entero virus" which is a gastro-intestinal virus which is common in children. So, now we have three infections to deal with, two viral (CMV and entero) and one yeast (candida parapsilosis). Tommy had this entero virus at the beginning of March and received 10 days of IVIG through his feeding tube as treatment for it. So, either this virus was not completely eradicated or Tommy has become reinfected with it. We have started treatment again for this virus with IVIG through his feeding tube. Please pray that Tommy does not have CMV in his blood and that the CMV DNA test from last week was just a "false positive." Also pray that these viral and yeast infections will clear up quickly and that Tommy will not require all these platelet and red cell transfusions. 31 Mar 00 (Day T+113) Tommy was started on cytogam and ganciclovir for treatment of CMV in his blood. The CMV DNA blood test was repeated today to see if the previous test was a "false positive." We will get the results on Monday. Until then we have to assume the test results are accurate and treat accordingly as this particular virus is very serious and can be life threatening to post transplant patients. The ganciclovir is a one hour IV infusion given every 12 hours and the cytogam is a two hour IV infusion given three times a week (Mon, Wed, Fri). We are praying that the CMV test was a "false positive" and that Tommy does not have this virus. If he does have the virus we are praying that these drugs will quickly get rid of this virus, as the ganciclovir is very hard on his bone marrow. Tommy is not showing any symptoms of this virus. Tommy's platelet count today was 28,000 as a result of the platelet transfusion he received on 29 Mar. His hemoglobin was down to 9.2 g/dl and his white cell count was 10.3 k/ul. Please continue to pray for Tommy and all the children here who are going through this bone marrow transplant process. 30 Mar 00 (Day T+112) Well, things are getting more complicated...literally. We just learned today that Tommy has now tested positive for CMV (cytomegalovirus) in his blood. This CMV DNA blood test is done weekly and has been done since our pre-transplant days. Most adults carry this virus in them and with a normal, healthy immune system, it is of no threat. However, it can be very dangerous to a transplant patient or someone with poor immunity. Tommy is not showing any symptoms of this virus but we know that it is now in his blood. It appears we will have to start a three times per week regimen of an IV drug called Cytogam or cytomegalovirus immune globulin (CMV-IVIG). It is similar to the IVIG he has been getting weekly, only it is loaded with specific IgG antibodies to the CMV. This means we will be back in clinic at least 3 to 4 times a week. Tommy will get his first dose of this drug tomorrow. Another drug he possibly could be started on is an IV drug called Ganciclovir, however this drug can severely depress the bone marrow (i.e., blood cell growth), and since we still have no clue as to how Tommy's marrow is doing with producing donor cells, our fear is this drug could destroy or severely damage what engrafted donor cells he already has. We are waiting to hear from Tommy's primary attending physician who is in California this week as to exactly what the treatment plan will be to combat this CMV. Also, yesterday (before anyone knew that Tommy was CMV positive) we were told it could take 7 to 9 months post transplant before Tommy's new blood cell production stabilizes!!! (If you all would let out a scream for me now, this would help me feel a little better). WE ARE VERY BUMMED!!!! If any of you have any encouraging words, notes or phone calls of support for us left, this now would be the perfect time to share them with us! "Why are you cast down, O my soul? And why are you disquieted within me? Hope in God; For I shall yet praise Him, The help of my countenance and my God." Ps 43: 11. 29 Mar 00 (Day T+111) Tommy woke up bleeding some from his mouth and his platelet count was down to 9000, so he had to be given another platelet transfusion today. His hemoglobin was down to 10.0 g/dl and his white cell count was 12.9 k/ul. Dr. Kurtzberg thinks that the candida parapsilosis infection in his GI track is the reason his counts have been dropping so fast lately. He has been requiring platelet transfusions every 4 to 6 days. These frequent transfusions along with the possibility that his candida infection has developed a resistance to ABLC (Amphotericin B Lipid Complex) is keeping us from being able to bring Tommy home. We are extremely tired and frustrated. Tommy felt pretty good today and had a good amount of energy tonight. We are very thankful for all the many prayers for us and our transplant friends here. 28 Mar 00 (Day T+110) Tommy's platelet count today was down to 12,000, which is close to his platelet transfusion threshold of 10,000. His hemoglobin was down to 10.3 g/dl and his white cell count was 10.4 k/ul. We still do not have the results of the bone marrow aspirate studies from the New York Cord Blood Center on his bone marrow aspirate done back on 1 Feb. We are now hearing that they are totally swamped and that it will probably be 1 to 2 more weeks!!! We were originally told at the beginning of Feb that these studies would take about three weeks, well it has now already been 8 weeks and we still have to wait 1 to 2 more weeks!! Tommy is continuing to get daily IV ABLC (Amphotericin B Lipid Complex) to treat his candida (yeast) infection in his GI track. Stool cultures were repeated yesterday to check for infections (viral and fungal/yeast). If the cultures grow candida, they will check to see if the candida is still sensitive to the ABLC. If the candida has become resistant to the ABLC then the plan is to switch to an experimental (non FDA approved) drug which is much stronger against candida. However, cultures of yeast can take a week or more to grow, so again more and more waiting. Tommy had another good day and felt pretty good for which we are thankful. Please pray for Tommy's donor cells to GROW and produce adequate numbers of platelets, red cells, and white cells so that he will not require more transfusions. Also pray for his infections to clear up quickly. 27 Mar 00 (Day T+109) Tommy had a really good day today, despite the gloomy, rainy day and his platelets hanging out at 20,000! He's had a good amount of energy with his hemoglobin at 11.1 g/dl . He was spinning around and "bouncing" to a Tigger sing-a-long video. We went to visit Thomas Wagstaff and his sister Jordan tonight; it was Thomas' 5th birthday today. Jordan is doing so well, they are planning to journey home to the mountains of NC sometime this week. She is an incredible young lady. The over-engorged spleen they removed from her weighed about 7 pounds! Can you imagine what a relief it was to have that thing out of her body??? We will definitely miss all of the Wagstaffs when they leave us behind. Hopefully it won't be much longer until Tommy can hold his platelet levels and we, too, can journey home. What a sweet day that will be! We all talk about how things here are left "in God's hands" and things will happen "in God's time", not ours. That is a difficult lesson to learn here, and a long one to come to understand. I think we certainly have a fuller understanding of this, but still have difficulty living with it everyday, fighting our own selfish wants and needs. It is an incredible experience and, again, not one we would wish upon anyone to have to go through! We thank God for your love for us and raising your prayers to Him for us and our transplant friends here. God's mercy and love abound in the patients and families of the pediatric transplant program. His blessings are abundant and His grace evident. So many courageous and brave children who have such trust, faith and hope. I guess this is what Jesus was talking about when He said, " Let the little children come to Me, and do not forbid them; for of such is the kingdom of God. Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it." Luke 18: 16-17 AMEN! 25 Mar 00 (Day T+107) Hi all! It's a bright sunshiny day here in Durham despite those Blue Devils losing in the NCAA men's basketball tournament last night. Other than the city being draped in black you wouldn't be able to tell anything was amiss! hahahahaha! (GO MICHIGAN STATE!!!!!) Tom is back from working a couple of days, thank the Lord! Tommy can be quite a handful at times and he is not easily portable without taking a bunch of stuff with us. Although I live my life to serve as "chief pack-mule" to my son, the wear and tear gets to me every now and then. Tommy slept pretty well last night after missing his afternoon siesta. He fell asleep at 7:30pm and was out for the night. That was nice, although he didn't get a bath because of it. Guess I will have to plan ahead tonight. He has gotten benadryl twice today, once as a pre-med before his red cell transfusion and then again before his ABLC (IV Ampho B infusion), so by the time of his next feeding he will likely be snoozing. I did mention red cell transfusion, which he received today. His hemoglobin was 8.0 g/dl, right at the cutoff. The doctor on call this weekend decided to go ahead and transfuse him since he's had bleeding issues lately. Guess if it were a weekday, we probably would have opted to wait, but he most likely would have needed it by tomorrow anyway. His magnesium held at 1.9 after playing around with his dosing. He continued with diarrhea for 2 days after starting the mag-oxide, so yesterday I tried the mag sulfate in his tube feeding twice and it worked! Sue Wood, Tommy's primary PNP (pediatric nurse practitioner), is supposed to call tonight, so we will likely discuss this issue as well as repeating stool cultures. Sue is wonderful and Tommy loves her. His platelet count today was 63,000 after being transfused 2 days ago. He has had no episodes of bleeding from his mouth since getting platelets. Jordan Wagstaff has been discharged from the hospital, she is doing so well! Thank you all for remembering her in your prayers! Chris looks good, very good (he has been here over a year!), Jenna sounds like she is doing better at home as well, gaining some strength. Pray that Tommy will hold his red cell counts and platelet counts, so that we may be able to come home sooner rather than later! "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. There is no searching of His understanding. 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." Is. 40: 28-31 AMEN! 23 Mar 00 (Day T+105) The numbers are getting larger, with more digits, aren't they??!! Well, life here is "grand". I'm a bit punchy from waking up automatically every hour or so last night to see if the buckaroo was bleeding from his mouth. Surprisingly he did not have much bleeding at all. Thank the Lord! His platelet count today was 10,000, so we headed off to clinic this afternoon to get a fill of platelets! His hemoglobin is at 8.3 g/dl and his white cell count is 10.1 k/ul; his kidney function studies are climbing some, probably from the ABLC antifungal drug he is on. His magnesium was 2.1, still normal, however, he is having diarrhea again. My guess is that it is from the "oral" magnesium that we switched him to yesterday (4 times daily). Today we will cut back to 3 times daily. He is still running low grade temps of 99-100 degrees, so something is still not right. I am going to push for them to reculture his stool tomorrow or Saturday, because if the ABLC is not doing the job, then changes need to be made, the sooner the better. I am tired of waiting on the slow boat to "never-never land"!!! Okay, I am a bit giddy from lack of sleep. Luckily I'm not too cranky yet. I think if we ever get this infection under control, his blood counts would stand a chance of climbing instead of backsliding. I realize he did get some very immature stem cells that take a longer period of time to "grow", but my patience is waning and we are all tired of "waiting". I've got to think more positively at this point and it's really getting hard to do. Tommy is really doing quite well for where he is at this stage of transplant. There are so many others who are suffering some difficult complications, so I have to remember this, but the selfish thoughts of "I want to go home" keep creeping into my head! Thank you for all your prayers for us. Please continue them because our journey here, and even when we do get home, is far from over. Immune systems in transplant patients don't recover fully until well over a year, sometimes longer. Also, thank you for praying for Jordan Wagstaff and her family. As of last night, she was up walking a few steps, sitting up some, but still in a good deal of pain. She is on continuous IV pain medication. Her platelets were 107,000 (5,000 before surgery) and her white count was 22 (0.2 before surgery)! The surgeon told her parents that her spleen was about 10 times larger than normal and way larger than even they had anticipated! Her parents are grateful for the prayers you have said on her, and their, behalf. They are overwhelmed by your thoughtfulness and we are so grateful for it! "For this reason I bow my knees to the Father of our Lord Jesus Christ, from whom the whole family in heaven and earth is named, that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height---to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen." Eph 3: 14-21 21 Mar 00 (Day T+103) Tommy had his "100 day studies" today and boy what a long and busy day it was!! Tommy had a lot of blood drawn for many different tests, then had an echocardiogram, chest xrays, and a pulmonary function test. He then received an infusion of IVIG and was seen by Dr. Kurtzberg. We still don't have the results of Tommy's bone marrow aspirate studies being done by the New York Cord Blood Center, but we now know why it is taking so long. They are seeing donor cells and have been doing additional DNA amplifications to sort out exactly which donor cells Tommy has in his bone marrow. When Tommy was transplanted this second time he received donor cells from multiple cord blood units in order to increase the chance for engraftment. On 9 Dec 99 he received a regular single cord blood unit, and then on 10 Dec 99 he received just the CD34 cells from three additional cord blood units. Thus, for this transplant he has received cells from four different donors!! So, Tommy could have engraftment from more than one donor. Tommy's platelet count today was down to 39,000. His hemoglobin level was down to 8.4 g/dl and his white cell count was 12.4 k/ul. They reduced his steroid dose from daily to every other day, and switched him to a different magnesium supplement (magnesium oxide). From looking at the inside of Tommy's mouth, Dr. Kurtzberg is suspicious that the candida parapsilosis (yeast) that Tommy has may now be resistant to ABLC (Amphotericin B Lipid Complex). So, they took a swab culture from his mouth to see if it grows this yeast and to test whether or not it is resistant to the ABLC. We should know something by the end of this week. They will switch him to another drug if this yeast turns out to be resistant to ABLC. Please pray for Tommy's infections to clear up quickly and for his donor cells to GROW. Also, continue to pray for Jordan Wagstaff. Her surgery went well today but she is in a lot of pain. |
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20 Mar 00 (Day T+102) WHEW!!! What a weekend! We can tell you about exhaustion and then some. I got back this evening from working in VA this Sunday and Monday. I left after work today and fully understand why "old" people don't drive in the dark OR in the rain! I must be getting up there in age, at least I feel like I've aged an extra 20 years in a short amount of time. God was good in bringing us all back together again. Tommy has been quite "spunky". He is FULL of energy. More than Tom and I have put together. His lab values were good today (hemoglobin 9.9 g/dl, platelets 63,000, white count 8.9 k/ul) and he has been urinating without any trouble this weekend. He is having trouble going to sleep even now. His Daddy bought him "Cranky the crane" from the Thomas the Tank Engine set. He is wanting to sleep with the thing. It is a wooden crane with a silly face on it, turns and has a moving arm. A few of the "Thomas" video tapes have "Cranky" in them and so this is all the more special to him! We are having to go to clinic for an "all-day" marathon tomorrow with Tommy's 100 day studies. Hopefully he will cooperate, so things will go quickly and smoothly. I worry about the pulmonary function test the most. When they did this same test prior to transplant, the tech just shoved a mask over Tommy's face and he did not react well (who would?), hitting her and us! I cannot understand why some of these people who work with children don't have common sense to explain what is going to happen, in simple terms, to the child BEFORE it happens! Take the fear away! A lot of them act as if the child doesn't know anything or have any fears or feelings. Please pray mostly for little Jordan Wagstaff who has to go through removal of her spleen tomorrow, which will be quite painful for her, post-operatively. Pray for God to calm her fears, give her competent, caring nurses & doctors. Pray for God to keep her free from infections and complications, like bleeding. Pray that she will not have to stay on a ventilator (breathing machine). Pray fervently for all these things and for her parents, Mike and Beth, and her brother, Thomas. What more can two parents endure??? Mike and Beth have been through the journey of having both their children diagnosed with a rare genetic disease called Sideroblastic Anemia which destroys their red blood cells. Gone through "cord blood transplant" at Duke with both of their children at the same time. Been told they had both engrafted with donor cells, only to find out later that that was not the case, both had failed to engraft. Fought post-transplant complications of low white counts, platelets, red cells; endured central IV line infections...life threatening with Thomas. And now...Jordan must have her spleen removed. How much can one bear? And I have to say, I find their strength incredible and amazing, but then that is how God works in our lives and reminds us of what is REALLY important in life! They truly have come to know the power and the mercy of God! Hug your children today and tell them you love them. We are grateful for your prayerfulness for us and our friends here. It makes transplant life more bearable. " 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..." 1 Pet 1:3-7 AMEN! 19 Mar 00 (Day T+101) When Tommy woke up this morning his mouth started bleeding from the inside of his cheek. The bleeding did not readily stop which is a sign that his platelet count is too low. When we arrived at the "BOPP" (i.e., treatment room on the bone marrow transplant unit) they checked his blood counts. His platelet count was down to 16,000 so they gave him a platelet transfusion which made the bleeding stop. His hemoglobin level was 8.9 g/dl and his white cell count was 14.3 k/ul. Tommy's urine culture from 17 March was negative which indicates that he does not have a urine infection. He did not have any difficulty urinating today. We are not sure what has been the causing the temperature he has been having the last several days. His temperature this evening was normal and hopefully it will stay that way. Well, we have made it past the "100 day milestone" for which we are very thankful. Tommy is still not out of the woods yet as his immune system is still very weak making him very susceptible to infections. Also, he is still requiring periodic transfusions of platelets and red cells. Tommy will have his "100 Day Studies" done in clinic this Tuesday, 21 March. They will draw a lot of blood for several test to include an immunological study. He will also have a pulmonary (lung) function test and echocardiogram (ultrasound of the heart) done. We are hoping that soon we will be able to bring Tommy home to Virginia, and then just bring him back to Duke once a week or so to be seen by his doctor and receive any transfusions he may need. Please continue to pray for Tommy's donor cells to GROW and that his infections will clear up quickly. 17 Mar 00 (Day T+99) Tommy has been having a lot of difficulty and pain when urinating. He is still running a temperature of around 99 to 100 degrees F. We suspect he might have a urine infection, so we collected a urine sample today for testing. We should have some preliminary results back by tomorrow. His platelet count today was 33,000 as a result of the platelet transfusion he received on 15 March. His hemoglobin level was down to 8.9 g/dl and his white cell count was 12.4 k/ul. Thanks for all the prayers for Tommy and the other children here who are going through this difficult bone marrow transplant process. Also, please continue to pray for Linette to feel better soon. 16 Mar 00 (Day T+98) Tommy felt pretty good today and had lots of energy. He still has a temperature of around 99 to 100 degrees F. We did not have to take him in to the clinic today which was nice! We gave him his ABLC medication this afternoon, a two hour IV infusion, and he did great with no problems at all. Please continue to pray for Tommy's infections to clear up quickly and for his donor cells to GROW. Also pray for Linette to get well soon. In addition, please pray for Jordan Wagstaff and her parents Mike and Beth. Jordan is a very special nine year old girl who received a cord blood transplant while Tommy was in the hospital during his first transplant. She has been struggling for some time with a serious post transplant complication with her spleen. She is scheduled for surgery on 21 Mar to have it removed as it is no longer functioning as it should. This will be a difficult and risky surgery due to her low white cell and platelet counts. 15 Mar 00 (Day T+97) They had to give Tommy platelets today. Late this afternoon he started bleeding some in his mouth, and when they checked his platelet count it was down to 6,000. We did get some good news on the CT scan of his lungs. His lungs are clear and there are no infections in them!! So, the infections in Tommy's GI track have not spread to his sinuses or lungs. Tommy received his ABLC IV infusion at the clinic today and had no problems with it at all. Tomorrow our home health care company will have everything in place so that we can administer this drug daily at our temporary "home" here in Durham. Tommy will have to receive this drug for at least two more weeks to clear up his candida parapsilosis (yeast) infection. Please pray for Linette as she has come down with a sinus infection and is not feeling well. Please continue to pray for Tommy's donor cells to GROW in his bone marrow and produce many new red, white, and platelet cells. Also pray for Tommy's infections to clear up quickly and that he will sleep continuous through the night so we too can get some much needed sleep. 14 Mar 00 (Day T+96) No transfusion needed today!! Tommy's platelet count is still hanging in there!! His platelet count today was 11,000. This makes the sixth day in a row that he has held his platelet count in the range of 11,000 to 13,000. Unless he shows signs of dangerously low platelets such as bleeding which will not stop, they will wait until this Thursday to check his blood counts again. His hemoglobin level today was down to 9.9 g/dl and his white cell count was 16.1 k/ul. Tommy had a very busy day. He had a CT scan of his sinuses and lungs, received IV infusions of ABLC and human immunoglobins (IVIG), saw Dr. Kurtzberg, and had the dressing changed on his central lines. The CT scan went very well. They did not see any infections in his sinuses. They will tell us the results of his lung scan tomorrow after they have had time to compare today's scan with a previous baseline scan done last August. He again did well with the ABLC (Amphotericin B Lipid Complex) IV infusion, so they will let us administer it at "home" so that we don't have to take Tommy to the clinic everyday just to get this medication. We still have not received the results of Tommy's bone marrow aspirate studies which are being done at the New York Cord Blood Center. It has been six week now, much longer than we were told it should take!! Tommy will have his "100 Day Studies" conducted next Tuesday, 21 March. More information on that later. Thanks for all the many prayers for Tommy and the other children here who are going through this difficult bone marrow transplant process. 13 Mar 00 (Day T+95) Tommy's platelet count held again at 12,000. This is the fifth day he has held his count at or above 12,000!!! His hemoglobin level also held at 10.4 g/dl. His white cell count today was 17.1 k/ul. Tommy received his ABLC IV medication and again did fine with it. Tommy is scheduled for a CT scan of his sinuses and lungs tomorrow morning. This time an anesthesiologist will be there to administer a stronger sedation drug to get Tommy asleep for the scans. Please pray that Tommy does not have any infections in his sinuses or lungs, and that the ABLC IV medication he is getting will completely clear up his yeast infection. Also pray that Tommy's donor cells will continue to GROW and that he will not require a platelet transfusion tomorrow. In addition, please remember in your prayers all the children here who are going through this difficult bone marrow transplant process. We are very thankful for the many prayers God has answered for Tommy and many other children here. 12 Mar 00 (Day T+94) Since the clinic is closed on the weekends, Tommy got to go to the "BOPP" today, which he really enjoys!! He received his ABLC IV medication and did well with it. We were quite pleased with Tommy's blood counts today, especially his platelet count which was 12,000. This is the fourth day in a row that Tommy has held his platelet count at or above 12,000 thus avoiding a platelet transfusion. This means Tommy's bone marrow is working hard at producing platelets. The longer he can go without needing a platelet transfusion the better. He gets transfused with platelets if his platelet counts falls below 10,000. His hemoglobin level was 10.4 g/dl and his white cell count was 15.9 k/ul. Please pray that Tommy's donor cells will continue to GROW and produce many new platelets, red cells, and white cells. Also, pray that the viral and yeast infections in his gastro-intestinal track will clear up soon and that he does not have any infections in his sinuses, lungs, or anywhere else. 11 Mar 00 (Day T+93) Okay, one good night, one bad night, hard to get 2 good ones in a row, so we take what we can get and hopefully the good outweighs the bad. We made it to the "BOPP" today: a treatment room on the bone marrow unit where outpatient kids who need to be seen on the weekend have to go. Tommy LOVES to go to the "BOPP". He would like to go there everyday. I think it's because it's smaller and he can watch his videos at his leisure. He thinks he's hot stuff. Tommy is a very social little boy and he loves company. He likes the doctors and nurses and to see people we've come to know here for the past several months. His platelets have held for 3 days now in the low teens. Today his platelets were 13,000; nothing to have a party over, but it's going in the direction we'd like it to go, and that is UP! His hemoglobin level was up to 10.6 g/dl as a result of the red cell transfusion he received yesterday. His white cell count was 15.5 k/ul. He did okay with his ABLC IV medication, and luckily, he did not need to have his central IV line dressing changed today! He was almost begging Dr. Kurtzberg not to change it...and she agreed with him! We saw our friend Jenna on the unit. She had an endoscopy yesterday and she may have an intestinal infection, GVHD or pancreatitis. Something is making her very nauseated and uncomfortable for the past several weeks. Pray that she will be cured of her ailment. Also, continue to pray for other children who've been through transplant and are suffering in various ways: baby Jacob, Chris (who's been here a year now), Jasmine, little Britton, Jordan who faces spleen removal, Thomas ...the list is so long. Thank you for all your prayers, faithfully, to our Father in heaven. "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." Col 3: 16-17. AMEN! 10 Mar 00 (Day T+92) Tommy had a great night, slept soundly, and did not have any bleeding from anywhere despite his low platelet count. His temperature broke last night and he has been happy and more like himself today. His platelet count held at 12,000 and his white cell count was 12.8 k/ul. His hemoglobin level was down to 7.9 g/dl so they gave him a transfusion of red cells. He received his second dose of ALBC (Amphotericin B Lipid Complex) and did well with it. He also received his last dose of daily IVIG for the entero virus. Please pray for these infections in his GI track to clear up quickly and that they have not spread to his sinuses or lungs. A CT of his sinuses and lungs is scheduled for Tuesday, 14 March. In addition, pray for his donor cells to GROW so that he does not require all these transfusions. Also please remember in your prayers all the children here who are going through bone marrow transplants. 9 Mar 00 (Day T+91) Hi all! Today was a much better day than yesterday, although we found out that the yeast bug Tommy has in his GI tract is resistant to the Diflucan he had been taking to prevent such an infection. The name of the yeast bug is "Candida parapsilosis" which is an aggressive type of candida. They started treatment today with a drug called "Amphotericin B Lipid Complex" or ABLC. It is given in IV form only and it will be given daily for at least the next 3 weeks. This is a synthetic form of the drug Amphotericin B, which is very toxic to the kidneys, among other things. ABLC is not supposed to have the toxicity Amphotericin B does. It can still cause high fever, chills, shakes, nausea, and vomiting. We will have to take him to clinic everyday to receive this drug. If he tolerates it without any problems, we may eventually be able to give it at "home" through our home health care agency. The infusion generally takes 2 hours. Tommy did well with it today, although he was somewhat fussy. Surprisingly he did not need red cells or platelets today. His hemoglobin was holding at 8.4 g/dl, his platelet count was 12,000, and his white blood cell count was 12.1 k/ul. This resistant form of yeast is a complication we, of course, did not want. This will delay us in getting back home, as it already has, but we must be mindful of Tommy's health and well being first and foremost, that's all that really does matter. Tommy is also still receiving daily IVIG for the entero virus he has. Please pray for these infections to clear up quickly and for Tommy's donor cells to GROW. Also, please continue to pray for our transplant friends Jenna, Thomas, Jordan, Jasmine, Chris and many others we could mention that are going through this transplant process. Pray for strength, courage, health, and hope for these children and their parents, for the road is long, and the struggle is weary to the body and spirit. "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." Phil 4: 4-7. AMEN! 8 Mar 00 (Day T+90) Only one way to describe today, well two words: total disaster!! We spent at least 3 hours in the CT area trying to get Tommy "sedated" with IV medications so he could be still enough for the scans. The disaster started when the nurses said they try not to sedate children unless they are too young to lie still, are in pain...blah, blah, blah. Now, we, as Tommy's parents have been through this more than once, and we and his doctor would not have asked for sedation IF we thought he could behave, understand, and lie perfectly STILL for 15 minutes to get worthwhile pictures. So, next some resident radiologist saunters in and tries to tell us the same thing. Well, let me just say that I didn't give him much of a chance to explain himself. Then, they decided to believe us and gave him some drugs for sedation, however, they did not make him completely sleepy before we went into the CT room. For those who have not been in a room like this before, it is dark, has a huge machine in it and it makes a growling noise which is probably what sent Tommy through the roof. From then on, there was no way he was going to relax and fall asleep. Absolutely none! We spent and wasted a whole hour or more lying on that table in the CT room, trying to get him to fall asleep. The nurse giving the sedation, who we can call, Miss No Personality, was pushing those IV meds in him fast and furiously. Now, with enough of these drugs there is a fine line between breathing and not breathing. I must say I was tempted to physically malign her (or somebody) more than once while we were down there. Not a very Christian thing to do or think. They then moved him to another room to try and settle him down, etc..... So to make an even longer story short, we took up 3+ hours of their precious time, just trying to get Tommy relaxed and sedated, and finally had to give up with no CT scans as he reached the maximum dose of both sedation drugs and was still wide awake and very agitated. The next step may be sedation with anesthesia present to give him something stronger like they did when they performed his bone marrow biopsy. However, due to the difficulty in scheduling anesthesia, the next available time they have given us is next Tuesday! (Good grief, we have to wait a week!). We will speak more with Dr. Kurtzberg tomorrow about this and the yeast infection in his stool, treatment, etc. We sure hope tomorrow goes better than today. Tommy was passed out most of the evening from all the drugs but did get up for 2-3 hours tonight to watch some videos. He is still having obvious blood visible in his stools. Not sure if it is just because his platelets are low again, if he has GVHD, or if it's from the yeast infection or the entero virus. The questions never end here and the journey is so long and tiring. He is still oozing some blood around one of his central IV lines tonight. We are praying that his mouth does not bleed tonight like it did last week when he had low platelet counts. We are pretty sure we will have to go to clinic tomorrow for some type of blood product. His quickly dropping blood counts worry us. Back in January he was holding onto his red cells for close to a month before requiring transfusion. Now he holds onto them for only 1-2 weeks at a time. We pray that it is only because of this infection he has and not because he has lost his donor cells or engraftment. His doctor does not think the worst, but it is always in the back of our heads and is so difficult to let go of and forget for another day, especially when your child is feeling bad and things are not right with them. Another sad note is that Jenna, whom we asked you to pray for in our note yesterday, is back in the hospital at Duke on the bone marrow unit. She has symptoms puzzling the doctors and she has felt very badly, physically, for most of her post-transplant time. Please pray for all of us here. It is a lonely, isolating, and physically, mentally, and spiritually draining endurance test, that we all, at one time or another, fear we are failing. But we carry on anyway, in the hope of another brighter, better day and give thanks to the Savior for all he has blessed us with to have another day! Peace! " Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us." Romans 5: 1-5 AMEN! |
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7 Mar 00 (Day T+89) Another "Super Tuesday" in the bag! Medically, not just politically!! We don't have any bone marrow aspirate/biopsy results from NY. It's only been FIVE weeks, I guess we shouldn't RUSH THEM!!!! They are obviously not the ones on the waiting end. No one who has been through this transplant mess would ever think of keeping someone else in the same difficulty waiting for such a long period of time! One of Tommy's stool cultures came back with an unidentified "yeast" in it. Dr. K. thinks Tommy has become resistant to the Diflucan that he has been on to prevent an infection of this sort. Tomorrow morning at approximately 10am we will get a CT scan of his sinuses AND his lungs to make sure he doesn't have any infection, yeast or otherwise, in them. The scan of the lungs was added on as a precautionary measure, and since Tommy will have to be sedated for this test, they felt it was something we might as well do. One of his central line IV catheters started to bleed while we were in clinic, and it was a fight to get it changed and cleaned. Tommy's platelets were 27,000 today, hemoglobin 8.4, white blood cell count 10.6; no labs to be drawn for 2 days, by then he will likely need red cells and platelets again. We are hopeful our son still has engraftment of donor cells, and is still making new cells, albeit slowly. Dr. Kurtzberg also said an infection or GVHD could chew up the cells a lot quicker than usual. We hope this yeast infection is something Tommy can get over easily without having to go back on Amphotericin IV, which is a horrible drug, known for its nasty side effects, not to mention, damaging to the kidneys. If you have been following Tommy's web page for some time, you will know how quickly and terribly sick these transplant children can get, without much warning at all. It is terrifying. Please pray for us tomorrow. "PRAY WITHOUT CEASING!" **Pray that the yeast that is infecting Tommy is one that is easy to get rid of with a change of oral medication. ** Pray that he does not have any sinus or lung infection. **Pray that Tommy's donor cells will continue to grow and produce many new red, white, and platelet cells soon. **Pray that as his platelets (clotting cells) drop that Tommy will not have any bleeding from his mouth, GI tract, IV sites or anywhere! **Pray that the entero virus infecting his GI tract will be gone. **Pray also for our friends, the Wagstaffs, whose children, Thomas and Jordan, still have a long journey ahead of them. Thomas is much better, out of the hospital. Jordan, now, is facing the likely probability of surgery to take her spleen out. A dangerous thing to do on a child who has no immune system to fight infection or platelets to help her blood clot. **Pray also for friends of ours from Chesterfield, VA, Jenna Sailsbury(12 yrs old), her mother Kay, father Ray, and brothers and sisters. Jenna has had a difficult road post-transplant with much nausea, high blood pressure, GVHD issues, high blood sugar, high triglycerides, low blood counts, and so on. I thought that being a nurse would help me through a good deal of this process, but no one, not one single person, including myself, could ever have known what this transplant experience would've been like! Even though transplant is a difficult journey, it is one made more bearable by the friendships and the special bonds formed from it. No one need be scared that the road will be travelled alone! Then, there is the Lord our God who is always here with us through all the rocky roads we've travelled and will travel. I cannot say enough about the strength of the children who face such devastating illnesses. They have an extraordinary amount of perseverance, toughness, just plain GUTS, in the face of life-threatening disease and treatment. God has shown us so much and has blessed us so much! We are thankful! "...let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross...For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls." Heb 12: 1a-2b, 3. AMEN! 6 Mar 00 (Day T+88) Tommy is continuing to make steady progress against against the entero virus (a gastro-intestinal virus). He is still receiving IVIG through his feeding tube which is helping. However, he still has nasal congestion and is occasionally throwing up some "mucousy slime." We will see his primary physician, Dr. Kurtzberg, tomorrow and she may have a CT scan done of his sinuses on Wednesday. Also, they may want to do some cultures of this "slime." He still has a temperature of around 99 degrees F. His hemoglobin level dropped to 8.8 g/dl and his platelet count dropped to 45,000. His white cell count was 10.0 k/ul. His magnesium level is holding steady at 1.8 mg/dl. We hope that tomorrow Dr. Kurtzberg will have the results of all the studies done on Tommy's bone marrow aspirate (done back on 1 Feb 00) from the New York Cord Blood Center. Please pray for Tommy's donor cells to GROW quickly and for this entero virus and nasal congestion to clear up. 4 Mar 00 (Day T+86) Tommy is feeling a little better and his stools are less frequent than they have been. He appears to be winning his battle against the entero virus, although he still has a ways to go. He is continuing to receive IVIG which is helping. He still has some nasal congestion and an occasional temperature of around 99 degrees F. His hemoglobin level was 9.4 g/dl. His platelet count was 92,000 as a result of the platelet transfusion he received yesterday. His white cell count was 9.9 k/ul. Thanks for all the many prayers for our little "buckaroo!!" 3 Mar 00 (Day T+85) We did not get much sleep last night because Tommy accidently bit the inside of his cheek. It took us a couple hours of holding an ice pack on the outside of his cheek to get the bleeding to stop due to his low platelet count. We took him to clinic today where he received a platelet transfusion since his platelet count was only 9,000. He is still feeling pretty lousy from the entero virus that he has. The IVIG he is getting is helping although he is still having several loose stools a day. He still has a slight temperature and some nasal congestion. His hemoglobin level was down to 9.5 g/dl. This hemoglobin drop was probably caused in part from the blood loss last night. His white cell count was 11.0 k/ul. Please continue to pray for Tommy to get rid of this virus and for his donor cells to GROW so that he does not require these transfusions. 2 Mar 00 (Day T+84) Tommy is feeling a little better today but is still having loose stools and is still running a temperature of around 99 degrees F. He still has some nasal congestion but it is improving. He received more IVIG today through his feeding tube which seems to be helping him fight this entero virus. His platelet count was down to 13,000 so he may need another platelet transfusion soon. His hemoglobin was up to 12.4 g/dl and his white cell count was down to 7.4 k/ul. His magnesium level held steady at 1.8 mg/dl. Thanks for all the many prayers for Tommy!! 1 Mar 00 (Day T+83) Tommy is feeling pretty lousy from this virus. He is still running a temperature of around 99 degrees F and is having lots of painful stools. He received one dose of IVIG through his feeding tube today and is suppose to get more tomorrow. He still has some nasal congestion. Please continue to pray for this virus to clear up quickly and for his donor cells to GROW without causing any complications so that we can bring Tommy home. We are all very tired of being here. P.S. We have added a new page called "Tommy's Fund" which can be accessed from the menu bar above. |
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29 Feb 00 (Day T+82) One of Tommy's stool cultures came back positive for "entero virus" which is a gastro-intestinal virus which is common in children. This explains what has been going on with him for the past five days. This virus normally last 7 to 10 days, however, since Tommy's immune system is weak it will probably take longer to run its course. They are planning to treat this virus with human immunoglobins (IVIG) given through his feeding tube starting tomorrow. His bottom is still very sore and itches, and causes him a lot of pain, especially when he stools. He did rest a little better last night. Reducing the amount of oral magnesium to once a day and giving him IV magnesium at night seems to be helping his gut. His magnesium level was up to 1.8 mg/dl which is in the normal range of 1.7 to 2.3 mg/dl. He still has a slight temperature and still has some nasal congestion. Today he received his weekly IV infusion of human immunogloblins (IVIG) and his monthly IV infusion of pentamidine. His platelet count was down to 32,000 and his hemoglobin was down to 11.2 g/dl. His white cell count was 10.8 k/ul. They have also reduced his steroid dose again. Dr. Kurtzberg has still not received the results of the studies done on Tommy's bone marrow aspirate from the NY Cord Blood Center. Tommy has been pretty tired and miserable today. Please pray for this virus to clear up quickly and for his donor cells to GROW without causing any complications such as graft-versus-host disease (GVHD). |
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28 Feb 00 (Day T+81) WHAT A NIGHT!!! That's the only appropriate headline for today! No sleep period! Tommy was rocking and rolling, whining and crying all night long! We have taken in stool cultures for viruses, bacteria, Clostridium Difficile toxin, and Candida (what a great job!). Tommy was fine later in the morning. No cramping, no pain, etc. So off to the clinic we went where he could make "liars" out of us, he was looking pretty good by then. We are suspicious of the high doses of magnesium he is taking in his tube feedings, either that or possibly he has the 'flu or he has some type of GVH disease going on in his gut. We should have preliminary results from the cultures tomorrow. Today we saw Dr. Martin and he decreased his magnesium to once a day in his food, at breakfast, and then starting tonight we will give him one daily dose of IV magnesium at bedtime. Tommy actually took a nap this afternoon without any fussing. His magnesium level today was 1.7 mg/dl, the lower end of "normal". Haven't seen that in weeks! He still has some nasal congestion and occasionally coughs up some mucous, although the children's Afrin seems to be working. We will still have to go back to clinic tomorrow to see Dr. Kurtzberg as usual. We are hoping to hear some news from Tommy's bone marrow aspirate done four weeks ago. However, most results come from the NY Cord Blood Center, where Tommy's cord blood units came from, and thus we have to wait on them. We are way tired! It has been one wild weekend with our buckaroo! I should say our "BIG" buckaroo, since he weighs 55 pounds now and could knock anyone over! As soon as he is fit,we will have him tryout at the Dallas Cowboys training camp for a linebacker position, since they need some help there anyway. Hahahahaha... 27 Feb 00 (Day T+80) Tommy is having more frequent and looser stools. His bottom is quite sore and he did not sleep well last night, tossing and turning most of the night. His nasal congestion has improved some but he still is running a temperature of around 99.6 degrees F. His magnesium level was down to 1.5 mg/dl so they gave him some IV magnesium. We will bring in stool samples for testing tomorrow morning. His hemoglobin level was 11.7 g/dl and his platelet count was 71,000 as a result of the transfusions yesterday. His white cell count was 10.8 k/ul. Tommy has not felt good today and has been very fussy. They do not know yet what is causing these problems. Please continue to pray for Tommy's health to improve and that he does not develop graft-versus-host disease (GVHD) or other post transplant complications. Also please remember in your prayers all the children here who are going through bone marrow transplants. 26 Feb 00 (Day T+79) Tommy received a transfusion of platelets and a transfusion of red cells today. His platelet count had dropped to 9,000 and his hemoglobin had dropped to 7.1 g/dl. His white cell count was 10.3 k/ul. His magnesium level held at 1.6 mg/dl which is just below the normal range of 1.7 to 2.3 mg/dl. Tommy did not sleep very well last night and has been pretty fussy today. He still has nasal congestion. He has had a slight temperature of around 99 degrees F today. They did some culture swabs of his tongue today. They may do a nasal virus culture and a CT scan of his sinuses on Monday if he does not improve. Please pray for Tommy's donor cells to GROW, his nasal congestion and fever to improve and for no complications to develop such as graft-versus-host disease (GVHD). P.S. Also, I have worked some on the Photo Album today. If you have had difficulty in getting some of the pictures to display on your browser, please try it again. It will take several minutes for all twenty pictures to display, depending on the speed of your internet connection, but hopefully you will be able to display all of them. 25 Feb 00 (Day T+78) Hi everyone! We are still here in Durham battling low platelets, red cells and low serum magnesium levels. Yesterday's lab values showed his hemoglobin steady at 8.3 and his platelets dropped from 50,000 on Tuesday to 19,000. His magnesium level increased to 1.6, which is a whole lot better (and closer to normal) than 1.2!!! Today Tommy is feeling rather sluggish (on this bee-yooo-tee-ful 70 degree day in Durham!), has a low-grade fever of 99` and nasal congestion. We need to watch him carefully, since any "minor" bug, to those of us with healthy immune systems, can be life-threatening to these transplant patients. Tomorrow we will most likely have to draw blood for more lab values and be transfused with at least platelets. It would be a nice surprise for Tommy (and US!) to not have to be transfused! Please continue in your ernest prayers for our son and all those children who have to follow this transplant path. It is an incredible journey and not one easily described. " ...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." Eph 6: 10-11 "Oh give thanks to the Lord, for He is good! Because His mercy endures forever." Ps 118: 1 22 Feb 00 (Day T+75) Tommy's hemoglobin held at 8.1 g/dl so they did not transfuse him with red cells!!! Tommy's white cell count today was 11.2 k/ul and his platelet count was down to 50,000. His magnesium level was 1.4 mg/dl so they gave him an IV infusion of magnesium. Hopefully this infusion along with the extra oral magnesium he is getting will increase his magnesium level to the normal range of 1.7 to 2.3 mg/dl. They are saying that it is not unusual for post transplant patients to need extra magnesium. They reduced his methadone dose by 50% to start the gradual weaning process for this narcotic pain medicine. They also cut his steroids by 50% and his G-CSF (granulocyte colony stimulating factor) by 25%. Tommy felt pretty good today and had a lot of energy despite his low hemoglobin level. Thanks for all the many, many prayers for Tommy. Please continue to pray for his donor cells to GROW so that he will not require transfusions. Some GREAT news to report, Thomas Wagstaff is now out of the Pediatric Intensive Care Unit (PICU)!!!!!!! Please continue to pray for Thomas and his sister, Jordan, and all the children here undergoing bone marrow transplants. 21 Feb 00 (Day T+74) Charlie and Marsha Barron from our home congregation came down yesterday to visit and help out some. Tommy was really happy to see them and had a great time!!! They had to return back to Virginia this afternoon. Tommy's white cell count today was 10.4 k/ul. His platelet count was 75,000 as a result of platelet transfusion on Sat, 19 Feb. His hemoglobin level was down to 8.1 g/dl which is just above his red cell transfusion threshold of 8.0 g/dl. His magnesium level was down to 1.4 mg/dl despite the extra magnesium he has been getting, so they have again increased the dose and frequency of the oral magnesium he is getting. Tommy has not had a lot of energy today, most likely because of his low hemoglobin level. Please pray for Tommy's donor cells to GROW, GROW, GROW!!!! 19 Feb 00 (Day T+72) Tommy received a transfusion of platelets today because his platelet count had dropped to 6,000. His white cell count today was 10.0 k/ul and his hemoglobin level was 8.5 g/dl. His magnesium level was up to 1.5 mg/dl but this is still below normal. Hopefully the extra magnesium he is taking will get this level up to the normal range (between 1.7 and 2.3 mg/dl) by monday when they check it again. Tommy is still on methadone, a long acting narcotic, for his lower back pain. Tommy felt pretty good this evening and had a lot of energy. Please continue to pray for his donor cells to GROW, GROW, GROW and produce adequate quantities of red cells, white cells, and platelets so he will not need these transfusions. Also please pray for Thomas & Jordan Wagstaff, and all the children here who are going through this very difficult process of bone marrow transplantation. Thomas Wagstaff is still in the PICU but his condition is improving. At noon today they were able to take him off the ventilator and so far he is stable and doing good!!! 18 Feb 00 (Day T+71) Today's labs showed that Tommy's magnesium level was still low, thus they gave him another IV infusion of magnesium and increased the dose of the oral magnesium he gets each day. They are closely watching his magnesium level because low magnesium levels increase his risk of seizures. His magnesium level today was 1.3 mg/dl and the normal range is between 1.7 and 2.3 mg/dl. Tommy's central line sites looked good today with no bleeding. His platelet count today was down to 12,000. They did not transfuse platelets today as they want to wait until his platelet count drops to 10,000 so that his bone marrow will be "stressed" to work harder at producing platelets. Each time his platelet count gets low like this we pray that his bone marrow will produce enough platelets to keep him above 10,000 so he will not need a platelet transfusion. His white cell count today was 10.0 k/ul and his hemoglobin level was 8.8 g/dl. Please pray for Tommy's lower back to heal quickly and for his donor cells to GROW, GROW, GROW without causing any post transplant complications. 17 Feb 00 (Day T+70) Tommy had a good day. Tonight we changed the dressing on Tommy's central line sites and fortunately were able to use a transparent dressing because the bleeding (i.e., oozing of blood) had stopped. This type of dressing is good for up to a week as long as he does not start bleeding again or damage the dressing in some way. Tommy was again very cooperative during this procedure!!! He does not like dressing changes and hopefully we will not have to change this dressing for a week. They will do labs on Tommy tomorrow (18 Feb) and hopefully his platelet count and hemoglobin will be high enough to not require any transfusions. We really appreciate all the prayers for Tommy and the other children here who are undergoing bone marrow transplants. Some of these children are having very serious complications. Thomas Wagstaff is still in the PICU but his condition is improving. 16 Feb 00 (Day T+69) When Tommy got up from his nap we saw blood oozing out and running down the outside of both of his central lines underneath the clear dressing which covers the two places where the lines exit his chest. The dressing was a mess with both dried and fresh blood. So they told us to bring him to the "procedure room" located in the pediatric bone marrow transplant unit. They drew some blood to check his blood counts and coagulation time and then changed the dressing. It took a good while to clean up all the dried blood off his chest and each of the lines. Tommy was very cooperative during this whole procedure. This was definitely the hardest and longest dressing change he has ever had to go through and we are very proud of how well he did!!! One of the two sites was still oozing a little blood so they put a gauze on it and we will have to change it tomorrow. We are not sure why both sites were bleeding. His platelet count tonight was 29,000 which is high enough to prevent spontaneous bleeding. He recently had a very low platelet count of 8,000 and did not bleed from these sites. The best that we can figure he must have irritated the sites just prior to or during his nap, possibly by scratching at them or rolling around on the bed. Tommy's white cell count was 10.2 k/ul and his hemoglobin was 9.3 g/dl. Tommy felt pretty good today and played some with his lego toys and his tugboats (from the children's TV program "Theodore Tugboat"). Please continue to pray for Tommy, Thomas & Jordan Wagstaff, and all the children here who are going through this very difficult process of bone marrow transplantation. 15 Feb 00 (Day T+68) Tommy's labs today were run at both the hospital pediatric lab and the outpatient satellite lab and the results were identical between the two labs and consistent with yesterday's lab results. His white cell count today was 8.8 k/ul. His platelet count was 58,000 as a result of yesterdays platelet transfusion. His hemoglobin level was 9.1 g/dl. His magnesium level has been trending downward the last few days thus they gave him an IV infusion of magnesium today and increased the dose of the oral magnesium he gets each day. He also received an IV infusion of human immunogloblins (IVIG). Tonight we changed the dressing on his central lines in his chest today and Tommy was very cooperative and remained very still during the entire procedure!!! Tommy felt good all day but by tonight his lower back was causing him some pain. He is getting methadone for his back pain which is helping. Please continue to pray for Tommy's donor cells to GROW, for his back to heal, and for no post transplant complications. Also, please continue to pray for Thomas and Jordan Wagstaff and their parents, Mike and Beth. Thomas is in the Pediatric Intensive Care Unit (PICU) with a blood staph infection. Jordan has an enlarged spleen and is facing possible surgery if her spleen does not improve. 14 Feb 00 (Day T+67) Well, all we can say is that medicine AND phlebotomy (blood work) are STILL NOT EXACT sciences! Friday's lab values (2/11) MUST have been erroneous, as we were suspicious of earlier that evening. We received a phone call this morning telling us that Tommy's platelet level today was only 8000!!!! So, we had to go to the clinic for a platelet transfusion. Our suspicion is the lab reversed two of the numbers from Friday's labs (i.e., the platelet level and the MCV). If that is true, then his platelets Friday were probably 40,000 not 92,000. We've gotten inconsistent lab data previous to this, so tomorrow may give us more of an idea of which values to believe. A lot of his chemistries (electrolytes, magnesium, etc.) today were way below what he usually runs. And his hemoglobin today was 4 grams lower than just 3 days earlier. Now for that to be accurate something is either destroying his red cells, he is bleeding somewhere, or he is fluid overloaded, only the latter of which could be anywhere near true at this point. So, another day, another lab value. We allowed ourselves to get excited over the prospect of Tommy making a lot of his own platelets, and it felt good, but reality strikes again! You just never know around here! After talking with Tommy's attending physician via e-mail, she is going to have us do comparison lab studies between the hospital lab and the satellite lab where we usually drop off his blood. She has the same questions about these values. Unfortunately, she is having to be the attending physician making rounds everyday in the transplant unit, thus she has not been in the clinic for the past week and will not be in the clinic this week, which makes it difficult for her to follow the outpatient children like Tommy who are going to the clinic. The transplant unit has been very, very busy and they have a few really sick kids in the Pediatric ICU also, so getting a sit-down meeting with her probably will not happen this week. Tommy is soooo happy his Daddy is back down here with us tonight. It is difficult doing this stuff alone. Just hauling Tommy's backpack w/ toiletries, meds, videos, extra supplies, and then another portable bag w/ his portable tube feeding gear....you just need an extra pair of hands alone for that. Sometimes I can relate to what a pack mule feels like. It is insanity and then some. The "why" question always floats around in my head. Anyway, Tommy is way happy to see Tom again. He has been active, happy and demanding, but he is getting quite good at cleaning up after people and putting things away....now if I could only get him to keep that up when we get him back home! HA! Many, many thanks to our colleagues where we work (Fort Lee, VA; St. Mary's Hospital, Richmond, VA) for their understanding and support to us through all of this. Words could never express our gratefulness. |
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11 Feb 00 (Day T+64) Hi All! We were pleasantly surprised today when we got Tommy's lab work back! Platelets, TODAY, STILL at an incredible level of 92,000 !!!! Wahooooo!!!! Usually his platelets drop like a rock after about 5-7 days post-platelet transfusion. He was transfused Monday when his platelet level was 5,000 (normal is 150,000-400,000). The circulating half life of platelets in the bloodstream (the amount of time they will live) is about one week, and his platelet level this past Tuesday, after transfusion, was 90,000. So we are hopeful he is on his way to producing his own platelets!!! His red cell counts were up as well. His stool cultures have been negative so far for viruses or bacteria. Tommy's doctor mentioned that he could be having some Graft-vs-Host going on in his gut to cause such frequent stools. We will have to keep an eye on this. Today his lower back started causing him some more pain, despite being on methadone (a long acting narcotic). Could be 'cuz he did some walking yesterday...and running...in the halls on the bone marrow transplant unit, where everyone was happy to see him. Please continue to pray for NO serious complications from this transplant. We are having to tether our happiness of increasing blood cell counts with the stark realities of transplant kids around us. One minute your child is running and apparently without problems, and the next thing you may be facing is your child in the PICU, on a ventilator, fighting for his life. We ask you to continue to pray for the Wagstaffs (Mike, Beth) and their children, Thomas (blood staph infection) and Jordan (enlarged spleen) for healing, strength, courage and hope in the midst of unceasing turmoil. "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 8:24-26 p.s......Many thanks for the Valentines for Tommy from all of you who have been caring for us for so long!! 10 Feb 00 (Day T+63) Tommy's lower back is feeling better. However, he has been having more frequent stools than usual so they started a culture on one of them. We learned today that Jordan Wagstaff's 4 year old brother, Thomas, is now in the Pediatric Intensive Care Unit (PICU) on an oscillator (special type of ventilator) fighting for his life from a staph infection. Both Jordan and Thomas Wagstaff had cord blood transplants at the time Tommy was in the hospital for his first transplant. Please pray for Thomas' condition to improve quickly and for Jordan's spleen to improve quickly so that she will not have to have surgery. Also, please pray for their parents, Mike and Beth, for strength during this very, very, difficult and frightening time. |
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8 Feb 00 (Day T+61) Tommy had a good day today. His energy level was up significantly as a result of the red cell transfusion he received yesterday. His hemoglobin level was 11.7 g/dl and his platelet count was 90,000 as a result of the transfusions. His white cell count was 7.8 k/ul. His blood pressure has been normal and his lower back is feeling better. Today we changed the dressing on the central lines in his chest and Tommy was very cooperative and remained very still during the procedure. He does not like these dressing changes, but tonight he did very well with it!! We are so proud of him!!! Please continue to pray for Tommy, Jordan Wagstaff, and all the children here who are going through this very difficult process of bone marrow transplantation. 7 Feb 00 (Day T+60) Tommy received a transfusion of platelets and a transfusion of red cells today. His platelet count had dropped to 5,000 and his hemoglobin had dropped to 7.7 g/dl. They have intentionally been holding off transfusing platelets until his platelet count had dropped to 10,000 to "stress" his bone marrow to produce platelets. He had to be transfused with red cells today because his hemoglobin had dropped below 8.0 g/dl. What this indicates is that Tommy's bone marrow is making red cells and platelets, however it is not able to keep up with demand. The time interval between transfusions is increasing, however he is not yet transfusion independent. Tommy's blood pressure has been normal today which is great because usually his blood pressure is high on the days he receives transfusions. His lower back is feeling a little better today. Please continue to pray for Tommy and all the children here who are undergoing bone marrow transplants. Especially pray for Jordan Wagstaff. Jordan is a nine year old girl who received a cord blood transplant while Tommy was in the hospital during his first transplant. She is now having a serious post transplant complication with her spleen. 5 Feb 00 (Day T+58) Tommy still has lower back pain from the muscle/ligament injury on 30 Jan. So, today Dr. Kurtzberg is starting Tommy on methadone. First dose was tonight at bedtime. She thinks this will help his pain better than the tylenol and morphine sulfate. Other than the back pain, Tommy has been feeling pretty good lately. He has been playing a lot with his lego toys and watching "Scooby Doo" videos. His blood pressure has been in the normal range the past few days. His white cell count today was 13.2 k/ul and his hemoglobin level was 9.1 g/dl. His platelet count today was 15,000 which is up from 11,000 yesterday. They do not want to give him platelets unless his platelet count drops to 10,000 so that his bone marrow will be "stressed" to work harder at producing platelets. We are praying that his platelet count will remain above 10,000 so that he will not need a platelet transfusion. Please pray for Tommy's back to heal quickly and for Tommy's donor cells to GROW, GROW, GROW without causing any complications such as graft-versus-host disease (GVHD). Also, please pray for Jordan Wagstaff. She is a nine year old girl who is having post transplant complications with her spleen. If her spleen does not improve soon she will have to have it removed, which is a difficult and frightening surgery for post transplant patients with low blood counts. 1 Feb 00 (Day T+54) Tommy had a bone marrow aspirate and bone marrow biopsy done today. Everything went as planned and Tommy did very well. The procedures were done under conscious sedation. The biopsy consisted of using a special needle to obtain a core of solid cortical bone. The aspirate consisted of using another special needle to aspirate liquid marrow and bone fragments. The aspirate sample will be used to conduct several studies to include testing for donor cells in each of the different cell lines and growth of progenitor cells (red, myeloid, and megakaryocytic) which requires about three weeks to grow. Other than being a little sore, Tommy is doing fine. He still has lower back pain from the muscle/ligament injury from 30 Jan. His blood pressure has been good today, in the normal range. His white cell count today was 10.9 k/ul and his platelet count was down to 67,000. His hemoglobin level was 10.1 g/dl. His steroids have been reduced from twice a day to once a day. Please pray for Tommy's back to heal quickly and that he will not have post transplant complications. 31 Jan 00 (Day T+53) Tommy's back was a little better today and he was able to stand some. He is still having lower back pain and we are giving him tylenol and morphine sulfate which is helping. 30 Jan 00 (Day T+52) Today we had a scare and were reminded again how fast Tommy's health can change. Shortly after Tommy got out of bed this morning he started to bend over to help pick up the bedspread and suddenly screamed in pain. We got him into bed and he laid on his stomach and indicated his back was hurting. He was able to move his hands, feet, and toes but it was too painful to sit up or move to another position such as on his back. We gave him some tylenol and called Dr. Kurtzberg who suggested we give him some morphine sulfate and wait 30 minutes to see if he felt good enough to sit up. It did help his pain some and eventually he would lay on his back, but he still would not sit up. Dr. Kurtzberg suggested we take him to the ER where they could take some xrays. She called ahead and arranged things so that we could get him into a room immediately and not have to wait around in a public waiting room where he could pick up viruses or other germs. Unfortunately it took a while to clear all the "frozen rain" off the sidewalk and car from the big winter storm. We got to the ER alright and shortly after we arrived Tommy decided to sit up on his own (he didn't like lying on the stretcher)!! This was a great relief!! From the xrays they thought one of his vertebrae in his lower back looked slightly compressed, but not like it was an acute injury from today. So they are chalking it up to muscle, ligament spasm, etc. We got back to our temporary lodging by late afternoon. He has sat up some tonight but he has trouble bearing weight or standing. They want him to take it real easy and rest his back for a couple days. They think this may be related to the cumulative effects of being on steroids for such a long time. Other than this event, Tommy has been feeling pretty good lately. His white cell count today was 12.6 k/ul and his platelet count was 107,000 (up from 10,000 as a result of a platelet transfusion on 27 Jan). His hemoglobin level was 10.4 g/dl. Tommy is scheduled for a bone marrow biopsy and a bone marrow aspitate on 1 Feb to see exactly what kind of cells are growing in his bone marrow and which ones are donor. Be sure to read the status entry below for 26 Jan, Tommy has donor cells!!! Please pray for Tommy's back to heal quickly and that he will not have post transplant complications. 26 Jan 00 (Day T+48) * * *ATTENTION!* * * THIS IS A SPECIAL ANNOUNCEMENT: PLEASE STAND BY!!!! TOMMY HAS DONOR CELLS !!!!!!!!!!!!!!! PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! The words of this song ring round in our heads as we contemplate the words of Dr. Joanne Kurtzberg, who called tonight and said: "The blood we sent for HLA typing on Tommy two weeks ago shows donor cells!!!" (GASP!) What did you say??? Could this be real??? You sent blood for HLA testing on Tommy two weeks ago???? We did not know that she had done so! We had ambivalent feelings toward doing HLA blood testing since the first transplant had failed. Words cannot express our profound joy at hearing such a statement! We will definitely have less trepidation and more optimism going into this bone marrow aspirate on Feb. 1.This has been such a VERY LONG process. The frustration, disappointment, and discouraging news to have to take each day has been such a burden to bear! It has taken a toll on our spirit, but hopefully not on our faith. We have tried to vanquish our doubts with our faith, your prayers, and encouraging words of hope. Hope has sometimes been a thin thread we were barely hanging on to. But, tonight, I could sense that something in Dr. K's voice was different....what was it??? controlled excitement???? Glee??? Victory??? Whatever it was, it was the sweet, sweet sound of hopefulness to our hearts and perhaps health and healing for our handsome, wonderful son who has come to know more about Jesus through the love you have shared with him. Please continue to pray for engraftment of these cells in his bone marrow and furthermore, for an UNcomplicated course post-transplant from any number of Graft-vs-Host Disease (GVHD) issues that can occur now or within the next year. The battle now has just begun and we hope the billions of stem cells that Tommy received will not battle each other to cause him more problems. We are grateful to the Church at Dinwiddie (Edgehill) and to the Church here in Durham for steadfast support and unending prayers on our son's behalf. Also many, many belated thanks for the cards, gifts and letters Tommy received from our brothers and sisters in Christ in West Virginia, Louisiana, Kansas, Texas, Tennessee, and elsewhere across this vast country. You have been a source of great comfort to us. Tommy still is battling high blood pressure from high dose steroids (that are being weaned) and some of his other anti-rejection medication. He has been "bored" from being isolated from friends, family, school and home. Our lonely "highlight" of most days is going to the clinic (how much fun is that!). We are thankful God has blessed us with this success and we ask you to continue to be prayerful for us. Transplant success is still a very long way away, but this good news brings us closer to it! TO GOD BE THE GLORY GREAT THINGS HE HAS DONE !!!!!! |
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23 Jan 00 (Day T+45) Tommy's blood pressure today was about the same as it was yesterday. His white cell count today was 14.9 k/ul and his platelet count was down to 17,000. His hemoglobin level was 11.3 g/dl. A good explanation of these and other blood counts can be found by going to Tommy's "Favorite Links" and clicking on the link for blood counts. Tommy felt pretty good today and played some with his toys and watched some videos. He really misses his grandparents and all his friends back home. Please pray that Tommy is growing donor cells. They will perform a bone marrow aspirate on 1 Feb to check for the presence of donor cells in his bone marrow. 22 Jan 00 (Day T+44) Tommy is still having some high blood pressures, e.g., 132/94. We are giving him nifedipine which is helping. His white cell count today was 13.6 k/ul and his platelet count was down to 18,000. They want to wait until his platelet count gets to 10,000 before transfusing platelets. His hemoglobin level was 11.4 g/dl. Tommy has been feeling pretty good lately. He enjoys playing with his lego toys and watching his "Scooby Doo" and "Little Bear" videos. He still has some pain in his mouth and throat. Please continue to pray for Tommy to grow donor cells. 21 Jan 00 (Day T+43) Tommy has been having some blood pressures as high as 130/90. We are giving him low doses of nifedipine as needed which is lowering his blood pressure into the normal range. His white cell count today was 12.0 k/ul and his platelet count was down to 31,000. His hemoglobin level was 12.1 g/dl. Please pray that this transplant is working and that Tommy is engrafting and growing new donor blood cells. 20 Jan 00 (Day T+42) Tommy is continuing to do well with his transplant. He is feeling good and has a lot of energy. His blood pressure has been getting a little high at times so we are now giving him nifedipine two or three times a day as needed. They have reduced the amount of IV methylprednisolon (i.e., steroids) he is getting which may help his blood pressure. His white cell count today was 12.4 k/ul and his platelet count was down to 41,000. His hemoglobin level was 11.6 g/dl. Please pray that Tommy is growing donor cells. 19 Jan 00 (Day T+41) Tommy had a good day today. His clinic visit was pretty quick and he was able to get back in time to take his afternoon nap. His blood pressure was a little better today. A couple times during the day he would be at the high end of the normal range. His white cell count today was 11.4 k/ul and his platelet count was down to 55,000. His hemoglobin level was 12.9 g/dl. We are very proud of Tommy and how well he has put up with everything that has been asked of him during this transplant. He is very good about wearing his mask, letting the doctors and nurses examine him, taking medication, doing mouth care, letting us change the dressing on his central lines, drawing labs, etc. Please pray for Tommy and all the children here who are undergoing bone marrow transplants. 18 Jan 00 (Day T+40) We survived all the snow and ice today and made it safely to and from the clinic. Today Tommy received an IV infusion of human immunogloblins (IVIG). His blood pressure was high, 135/99, so they gave him some blood pressure medicine which brought it down to a normal level. His blood pressure was fine tonight when we checked it. His white cell count today was 13.7 k/ul and his platelet count was down to 88,000. His hemoglobin level was 12.5 g/dl. Please continue to pray that Tommy is engrafting and growing donor blood cells. 17 Jan 00 (Day T+39) Tommy's blood pressure has been normal today and he is feeling better. He is also walking better and is able to bend his left leg more today. He is really getting into playing with his lego toys and can't seem to get enough!! He loves to follow the diagrams and assemble the pieces to make cars, wagons, men, etc. He also loves to have us read him books, especially his "Little Bear" books. He really misses his grandparents and constantly wants us to read him the story where Little Bear visits his grandparents!! He has also taken an interest in eating cheese puffs. He will bit off a small amount, chew it, and swallow it. This is great that he is taking an interest in putting food in his mouth as he is feeding tube dependent for all of his nutrition (as a result of his dyskeratosis congenita) and has a strong aversion to anything going into his mouth!! His white cell count today was 11.6 k/ul and his platelet count was down to 105,000. His hemoglobin level was 12.2 g/dl and has been holding at about this level for the past 5 days. We truly appreciate all the many prayers for Tommy!!! 16 Jan 00 (Day T+38) Yesterday Tommy received a platelet transfusion because his platelet count was down to 14,000. After the transfusion his blood pressure was high, 139/96, and he was given medication to bring it down. Today his blood pressure has been normal and he has been feeling pretty good. His platelet count today was 147,000 and his white cell count was 11.2 k/ul. Tommy has been hobbling around for the past couple days due to an accidently twisted left knee. They will do xrays if it does not improve but hopefully it will be fine. We still do not know whether or not Tommy has any donor cells. They will do a bone marrow aspirate on 1 Feb to check for donor cells. We have chosen to wait for the results from this study and not do any more peripheral blood testing, since we do not want to ride the emotional rollercoster like we did during the first transplant when they drew blood for testing every week or so. Please continue to pray that Tommy is engrafting and growing donor blood cells. 13 Jan 00 (Day T+35) Today's clinic visit was not very long as Tommy did not require any transfusions or special IV medications. His white cell count today is 11.8 k/ul. This number is down some because the blood is now being drawn at a later time in the day than it was while he was in the hospital. It is normal for the white cell count to fluctuate during the day. His platelet count was 27,000 and his hemoglobin level was 12.2 g/dl. His blood pressure was elevated today, pushing the high end of the normal range. It has been slowing trending upward for about a week. It is not high enough to require blood pressure medicine but they are monitoring it closely. Tommy will have to be seen every day in clinic until at least Day T+45. Then, if he is doing good they may start reducing the frequency of the clinic visit to 2 or 3 times a week. A lot depends on his blood counts and his need for transfusions. The "100 day rule" requires transplant patients to stay in Durham for 100 days after transplant before returning to their home town. There have been some exceptions granted to this rule for patients doing very well who do not live too far away to allow them to go home for a few days or weekend. The outpatient workload required to care for Tommy is tremendous and very exhausting on us. From early in the morning till late in the evening we are giving him various IV and oral medications, drawing labs and taking them to the clinic, taking him to the clinic, flushing his central lines and changing the caps, etc... Please pray that this transplant is working and that Tommy is engrafting and growing new donor blood cells. |
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11 Jan 00 (Day T+33) We have survived our first complete day as outpatient. We are very tired as we had to spend 7 hours in the clinic today. Tommy received an IV infusion of human immunogloblins (IVIG) and was seen by Dr. Kurtzberg, Tommy's primary physician and the director of the pediatric bone marrow transplant program at Duke. Tommy is doing very well and enjoys being out of the hospital. A bone marrow aspirate is scheduled for 1 Feb 00 to check the bone marrow for donor cells. Please pray that Tommy is engrafting and growing new donor blood cells. 10 Jan 00 (Day T+32) We were discharged from the hospital this afternoon!!! It was a very busy and stressful day for all of us. Tommy is really happy to be out of the hospital. Linette has recovered from the flu and is feeling good enough to be able to be with Tommy. We are now in "outpatient" status which means we are responsible for drawing blood daily and taking it to the clinic, giving all IV and oral medications, changing dressings, flushing his central lines and changing the caps, feeding him four times a day via his feeding pump, etc... and taking Tommy to the Duke clinic for several hours every day to be seen by the pediatric bone marrow transplant doctors!!!! Tommy received a transfusion of red blood cells this morning because his hemoglobin level was 7.8 g/dl. They transfuse red cells anytime the hemoglobin drops below 8.0 g/dl. His white cell count today was 15.9 k/ul. Yesterday he received a transfusion of platelets. Also, Gregg Elrod, the preacher from our home congregation, came down yesterday and spend the night with Tommy. Tommy is always very excited to see Gregg and has a great time with him whenever he comes to visit!!! Please check the Photo Album for two new photos of Tommy (one of him playing basketball and one of him getting ready to leave the hospital). Please pray that Tommy is engrafting and growing new donor blood cells and that he will remain free from infections and not have any complications from the transplant. 8 Jan 00 (Day T+30) Linette is still sick but is feeling a little better. She probably will not be well enough to see Tommy until at least this coming Monday. She misses seeing Tommy very much. Tommy is continuing to do very well although he misses his "mama." He is still having some pain for which he receives oral pain medicine. His white cell count today was 14.5 k/ul. Charlie Barron came up for the day and visited with Tommy which gave me a much needed break. Tommy had a great time walking in the hallway, playing with his toys, watching some "Scooby Doo" video tapes, and reading some books. Please pray for Tommy to grow donor cells and for Linette to get well soon. 7 Jan 00 (Day T+29) Tommy is doing very well, however, Linette is still too sick to be able to see him. She is feeling a little better today. Tommy misses her very much. He is still having some pain in his throat and mouth and was given some oral morphine which helped. Tommy felt like playing a lot today. He also walked some in the hallway which is always very helpful for his lungs. His white cell count today was 13.5 k/ul. Joyce Tiffany visited him this morning and Amy Miller visited him this evening. He really enjoys having visitors and loves to show them all his new toys!! Please pray for both Tommy and Linette. 6 Jan 00 (Day T+28) Tommy continues to do well as we wait for donor cells to grow. His white cell count today was 14.4 k/ul. Linette is still sick, and because Tommy's immune system is very weak, she cannot come to the hospital to see him. This has been hard on all of us. Tommy is still having some pain in his throat and mouth from the mucositis. The pain is much less than it was a couple weeks ago and it can be controlled with oral pain medications. Tommy walked some in the hallway and played a good amount today. The Eudaileys stayed with Tommy for a couple hours this evening and Tommy had a great time!! Please pray for Linette to get well soon and for Tommy to grow donor cells. 5 Jan 00 (Day T+27) The results of the DNA level HLA typing of Tommy's blood from 27 Dec (Day T+18) indicate that there were no donor cells in his blood. They are saying it is quite possible he has donor cells engrafting in his bone marrow but that it is too soon to see them in his blood. They are telling us to not be discouraged and to give it more time. This is very hard for us as we have been down this path before during the first transplant and Tommy never did grow any donor cells. They have not told us when the next test will be done to look for donor cells. His white cell count today was 13.4 k/ul. They fixed the temperature control in Tommy's room today and we moved back in from his temporary room next door. Tommy was very happy to get back to his own room which has all his decorations, toys, photographs, etc. Linette is still feeling very sick and thinks she may have the flu. Because Tommy's immune system is so weak and susceptible to viruses, she has not been able to come to the hospital to see him for several days now. Tommy and his daddy really miss her!! Tommy had some good sessions today with his speech therapist, occupational therapist, and physical therapist. He walked several laps in the hallway and played some with his toys. Lee Hagelbarger from the Durham Church of Christ came to stay with Tommy for a couple hours this evening and Tommy had a great time!! 4 Jan 00 (Day T+26) Tommy's white cell count today was 12.8 k/ul. We have not received any results from the DNA test to look for donor cells. Today he received an IV infusion of human immunogloblins (IVIG) and had the dressing changed on his central lines. They have still not fixed the temperature control in Tommy's room so we are still temporarily in the room next door. Linette is feeling even worse today and is now getting bronchitis. She is now taking a different antibiotic which should help her feel better in a couple days. Tommy is still doing well. He had a good session with his hospital school teacher and his speech therapist. Please pray for Linette to get well soon and for Tommy to grow donor cells. 3 Jan 00 (Day T+25) Tommy continues to do well with his transplant with no signs of any complications. His white cell count today was 12.0 k/ul. We have not received any results from the last DNA test to look for donor cells in his blood. Hopefully we will hear some good news soon. Tommy received a platelet transfusion today because his platelet count was down to 20,000. They have still not fixed the temperature control in Tommy's room so we are temporarily in the room next door. Tommy really prefers his regular room and is anxious to move back!! Linette saw a doctor today and got some prescriptions which should help her to feel better. Please pray for Linette, Tommy, and all the children here who are undergoing bone marrow transplants, as several of them are battling infections and other complications. 2 Jan 00 (Day T+24) Tommy continues to do well as we wait for donor cells to grow. His white cell count today was 9.6 k/ul. We have had to temporarily move to the room next door because the temperature control in his room went out today causing the temperature to rise into the mid 80's. Hopefully they will get it fixed tomorrow. Linette is not feeling good and has a lot of sinus congestion. She stayed at our temporary lodging in Durham today to get some rest. Hopefully she will feel better by tomorrow as Tommy really misses her!! Please pray that Tommy is growing donor cells and that Linette will feel better soon. 1 Jan 00 (Day T+23) Tommy had another good day. His blood pressure and temperatures were normal. His blood counts and other labs were fine. His white cell count today was 8.3 k/ul. We are praying that some of these white cells are donor cells. Tommy had a lot of energy today. He played with some of his Christmas toys and walked several times in the hallway!! His immune system is still very weak and he has to wear a protective mask anytime he leaves his room. Please continue to pray that Tommy is engrafting and growing donor blood cells. We truly appreciate all the many prayers for Tommy and we pray that 2000 will be a wonderful year for all of you!!! 31 Dec 99 (Day T+22) Tommy continues to do very well with his transplant. We are still waiting for test results to know if donor cells have begun to show up in his blood. His white cell count today was 7.6 k/ul. Tommy was excited to see Marsha and Shirleen from our home congregation who drove down for the day to visit. He had a great time!! Please pray that Tommy continues to do well and that he grows donor cells. 30 Dec 99 (Day T+21) Tommy had a good day today. His mucositis is continuing to improve each day. They have switch from IV fentanyl to oral morphine sulfate for pain control. His white cell count today was 8.0 k/ul. Tommy played a good amount today and even rode the "big wheel" tricycle in the hallway!! The Eudaileys from the Durham Church of Christ stayed with Tommy for a couple hours this evening which gave us a chance to go out to dinner. Please pray that Tommy is engrafting and growing new donor blood cells and that he will remain free from infections and not have any complications from the transplant. 28 Dec 99 (Day T+19) Tommy is doing great. He is feeling better and is playing more. The mucositis in his mouth is looking better and beginning yesterday they stopped the continuous IV fentanyl for pain control. He can still receive a dose of fentanyl whenever needed by pressing a button on the pump. Today he received an IV infusion of human immunogloblins (IVIG) and had the dressing changed on his central lines. His temperature and blood pressure has been normal. His white cell count today was 7.2 k/ul. We are very thankful for all the many prayers for us. Please continue to pray for Tommy and all the children in this unit who are undergoing bone marrow transplants, as several of them are battling infections and other complications from their transplants. 27 Dec 99 (Day T+18) We have received some very disappointing and frustrating news. The results of the DNA level HLA typing of Tommy's blood from 20 Dec (Day T+11) indicate that there are no donor cells in his blood. We were really praying for donor cells from this test so that we would not have to go through the total agony of repeated testing and waiting for the test results as we had to do during the first transplant. They are saying it is quite possible he has donor cells engrafting but that it is too soon to see them. Following is a summary of a very detailed explanation Dr. Kurtzberg gave us of what's currently happening and what is expected to happen concerning engraftment for Tommy. Because of the nature of Tommy's disease they could not give him high enough doses of chemotherapy or radiation to completely kill his bone marrow. Thus, they expect to see some of Tommy's cells growing back. He was given low dose cytoxan and ATG to suppress his immune system so that he would not reject the donor cells he received (i.e., the cord blood transplant). If this worked, we should see emergence of new donor blood cells in the next 2-4 weeks. We expect to see both his cells and donor cells for several months and later over 1 to 3 years, a gradual takeover of marrow function by the donor cells as Tommy's own bone marrow gradually dies from the dyskeratosis congenita. The new cells that are now showing up in his blood are Tommy's own myeloid cells stimulated by the G-CSF (granulocyte colony stimulating factor) he is receiving and growing from his bone marrow as it recovers from the chemotherapy. Myeloid cells are cells that evolve into either red cells, platelets, or white cells other than lymphocytes. These myeloid cells of Tommy which are growing back should not interfere with the much desired engraftment of the donor cells he received. Only lymphocytes and other immune cells (that do not circulate in the blood) will contribute to rejection of the donor cells, and the cytoxan and ATG that Tommy received should have taken care of these. The G-CSF he is receiving will stimulate both the donor cells and Tommy's cells to grow. The plan now is to wait. They drew blood this morning to repeat the HLA test to look for donor cells. It can take up to a week to get the results back from this test. Also, at about 4 weeks post transplant they can do a bone marrow aspirate which is more sensitive than a blood test to look for donor cells. Tommy had a good day today. His white cell count today was 6.6 k/ul. He was really excited to see his grandma and grandpa (Burnette) and his uncle Howard and aunt Kathy (Burnette) who came for a visit today. Please pray that Tommy is engrafting and growing new donor blood cells and that he will remain free from infections and not have any complications from the transplant. |
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25 Dec 99 (Day T+16) Tommy is continuing to do very well. His white cell count today was 6.0 k/ul. His platelet count was 132,000 as a result of the platelet transfusion yesterday. This morning he received a transfusion of red cells because his hemaglobin was at 7.9 g/dl. He is still receiving continuous IV fentanyl for pain control. He felt pretty good most of the day and walked some in the hallway. Santa came to his room about 8:30 this morning to personally deliver some Christmas presents!! Tommy loves to get presents and really gets excited when opening them!! Amanda Tawney from the Durham Church of Christ stayed with Tommy for a couple hours today. It was nice to get a break and Tommy had a great time!! 24 Dec 99 (Day T+15) Tommy is doing very well for 15 days post transplant. His temperatures and blood pressures have been normal. He received a platelet transfusion today since his platelet count had dropped to 19,000. His white cell count today was 5.1 k/ul. He is still having some pain which is normal for this point in the transplant. He hair is continuing to fall out but he does not seem to mind it and his hair will grow back. Tommy has been more playful today and has spent less time in his bed. He sat up more in the chair and walked a couple times in the hallway. They had an excellent singing group here today singing Christmas songs and there was a nice dinner provided for all the families on the unit. Tommy had a great time opening a couple of his Christmas presents early and playing with them. He is very excited about Santa coming tonight!! At bedtime we sprinkled some "magic reindeer food" just outside of his door to help guide Santa and his reindeer to his room. Please pray that Tommy is engrafting and growing new donor blood cells and that he will remain free from infections and not have any complications from the transplant. Thanks for all the cards, gifts, e-mails, phone calls, packages of goodies, donated leave, and especially the many prayers for Tommy and us. We are overwhelmed by your love and wish all of you a very special and Merry Christmas!!! 23 Dec 99 (Day T+14) Tommy had a good day today. His temperatures have been near normal and he is feeling more like his usual self, playful and happy. His white cell count today was 4.8 k/ul. His mouth is looking less inflamed but it is still causing him pain, and now his bottom is red and sore from all the antibiotics he is on. He is getting IV fentanyl for his pain which is helping. His hair is falling out as a result of the chemotherapy he received a couple weeks ago. This is normal and it will grow back. He has been sitting up in the chair today and has walked a couple times in the hallway. The Eudaileys from the Durham Church of Christ stayed with Tommy for a couple hours this evening which gave us a chance to go out to dinner. Tommy had a great time!!! Please continue to pray that Tommy is engrafting and growing new donor blood cells. 22 Dec 99 (Day T+13) Fever gone!! Tommy's temperatures have been near normal for most of the day. His white cell count today was 4.3 k/ul. He is still having pain from the mucositis and is getting IV fentanyl for pain control. He is still on several antibiotics, antiviral and antifungal drugs to help prevent infections. He has been sitting up in the chair today and has walked a couple times in the hallway. He is still weak and it takes a lot of effort for him to walk one lap down the hall and back. Tommy is one tough little boy and we are very proud of how well he has put up with everything that has been done to him. He was feeling pretty good and laughing this evening while watching one of his "Winnie the Pooh" video tapes. We are very thankful for all the many cards, gifts, and prayers for Tommy!!! 21 Dec 99 (Day T+12) Tommy is still running a fever today. Blood cultures continue to be negative for any infections. They are saying that many things could be causing this fever and that it might be from engraftment, but they can not be certain of this until the HLA typing results come back. They are very pleased with how Tommy is doing so far with his transplant. His white cell count today was 2.9 k/ul. He received an IV infusion of human immunogloblins (IVIG), a platelet transfusion, and had the dressing changed on his central lines. He is getting IV fentanyl for pain control from the mucositis of his mouth and GI track. Tommy has been sitting up in the chair today watching some "Winnie the Pooh" and walking a little in the hallway. Santa came by for a visit and Tommy got his picture taken with him!! Also, some carolers came by singing Christmas songs. It was good to hear Tommy laughing some tonight while watching a Pooh video tape!! Please pray that Tommy is engrafting and growing new donor blood cells and that he will remain free from infections and not have any complications from the transplant. 20 Dec 99 (Day T+11) Tommy is still running a fever around 101 to 102 degrees F. At times during the day his temperature will return to normal for a while and then the fever comes back. They are giving him antibiotics. The preliminary results of his blood cultures have been negative for any infections. They are watching his temperatures closely. He still has some diarrhea. His blood pressures have been normal. He received his last scheduled dose of ATG (Anti-Thymocyte Globulin) and did fine with it. His white cell count today was 3.0 k/ul. He is definitely growing some white cells, the question is are they his old cells growing back or are they new donor cells from the cord blood transplant he received? We are hopeful that this is a sign of engraftment of the donor cells into his bone marrow. So, to answer this question, they are doing DNA level HLA (Human Leukocyte Antigen) typing of his blood. It can take up to a week to get the results back from this test. Tommy has been sitting up in the chair today watching "Rudolph the Red-Nosed Reindeer" and "Scooby Doo!!" He is getting IV fentanyl for pain control from the mucositis. He's getting excited about Santa coming to bring him presents!!!! 19 Dec 99 (Day T+10) Tommy is still having some pain and his mouth is still sore from the mucositis. He is running a fever around 101 to 102 degress F. They drew another set of blood cultures this morning to check for infections. The results of these are not back yet. He still has some diarrhea but it is getting better. His white cell count today was 2.0 k/ul. His blood pressures have been normal. He did walk one lap down the hall and back and sat some in the chair!! Walking and sitting is important to help keep his lungs healthy. Please continue to pray for Tommy's health and for him to engraft and grow new donor blood cells!! 18 Dec 99 (Day T+9) Tommy's mouth is looking a little better however he still has pain from the mucositis. He is also running a slight temperature which they say is normal. He is on antibiotics which are helping to clear up his blood infection. He still has some diarrhea. Yesterday he received another dose of ATG (Anti-Thymocyte Globulin). This drug is given to kill lymphocytes (a type of white cell) in order to help prevent rejection of the transplanted cells he received. His white cell count today was 1.1 k/ul. His blood pressures have been normal. They have discontinued the dilantin (anti-seizure drug) as they think he does not need it anymore. Twice today he has walked a lap down the hall and back. He is also sitting in the chair more today. 16 Dec 99 (Day T+7) Tommy is feeling a little better today. He still has pain from the mucositis but the fentanyl is helping. His mouth is very sore but the bleeding has stopped. He did not do any of his mouth care today. He still has diarrhea but it is improving some. Recent blood cultures have come back negative which means the antibiotics are working to clear up his blood infection. His white cell count today was .4 k/ul. Although it was difficult for him, Tommy walked some in the hallway. Please pray for Tommy's blood infection to clear up and for him to engraft and grow new donor blood cells. 15 Dec 99 (Day T+6) Tommy has been in a lot of pain today from the mucositis of his mouth and GI track. His mouth is very sore and has been bleeding some. He has not felt like doing much of anything other than laying on his bed or sitting in our lap. He has also had some difficulty urinating. They switched his continous IV pain medication from morphine to fentanyl, which he was on and did well with during his first transplant. He is still having diarrhea. One of his central venous lines clotted off today and had us worried for a while. They were able to eventually open it up using an anti-clotting drug to dissolve the clot. His white cell count today was .2 k/ul and his platelet count this evening was 16,000. They will give him a platelet transfusion tonight. Please continue to pray for Tommy and all the children in this pediatric bone marrow transplant unit. 14 Dec 99 (Day T+5) Tommy started having diarrhea and felt lousy last night. They believe the diarrhea is from all the antibiotics he is getting and from mucositis of his GI track caused by the chemotherapy he received. He did not want to do his mouth care this morning due to the pain from the mucositis in his mouth. This afternoon Tommy was started on an IV pain medication pump to help relieve pain. This pump continuously infuses a small dose of morphine. It also has a device with a button which when pushed pumps an additional amount of pain medication. The pump has a timed safety lockout to prevent overdose. Once he was receiving the pain medication he felt much better. Tommy received an IV infusion of human immunogloblins (IVIG), a dose of Anti-Thymocyte Globulin (ATG), and had the dressing changed on his central lines. Tommy's white count today was again .1 k/ul which means he has no ability to fight infections (e.g., bacterial, viral, fungal, etc.) on his own. He is receiving various antibiotics, antiviral, and antifungal drugs. The antibiotics appear to be working on his blood infection as his temperatures have been lower today. Tommy did get out of his room today, which he has not felt like doing in several days, and walked a lap down the hall and back!! |
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13 Dec 99 (Day T+4) Tommy's fever is a little lower today. His white count today was .1 k/ul (i.e., virtually zero). Tommy is feeling pretty lousy from the fever and all the medications he is on. L.V. Paden came down for the day to visit and brought Tommy's grandma Lillian Jozwiak, who will stay for a few days to help out. Tommy was very excited to see them!!! Please pray for the blood infection to clear up soon and for Tommy to engraft and grow new cells. 12 Dec 99 (Day T+3) Tommy has had a fever the last couple days, the highest was 102.6 degrees. Blood cultures indicate a bacterial infection, and he is on antibiotics. The results from the MRI and from the lumbar puncture indicate that the seizures he had last Thursday were from the cyclosporine. There was no brain damage and there were no infections in his spinal fluid. His blood pressure has been normal the last couple days. He is still a little woozy from the dilantin he has been getting. His white cell count has been steadly dropping as expected from the cytoxan and ATG. His white count today is .1 k/ul which is very, very low (normal range is 3.8-14.0 k/ul). Gregg Elrod, the preacher from our home congregation, came down this afternoon to spend the night with Tommy and give us a break. Tommy was very happy to see him!! 10 Dec 99 (Day T+1) Tommy has not had any seizures today. He is still weak, woozy, and fussy from the dilantin (anti-seizure medication) they gave him. They said he would probably start feeling better by this Sunday. This afternoon they did an MRI of his brain and a lumbar puncture (to check his spinal cord fluid for any infections). Both of these were done under sedation and went well. Late this afternoon he received more donor cells!! This was similar to yesterday's transplant, however this one contained only the CD34 precursor stem cells which had been separated from a mixture of three additional units of cord blood. This was the first time a transplant using multiple cord blood units had been performed at Duke. A small number of multiple cord blood unit transplants have been done at other hospitals and resulted in engraftment for patients who had failed to engraft on their first transplant. Today's transplant can be thought of as a boost to the regular single unit cord blood transplant he received yesterday. Tommy had no blood pressure problems during the transplant. He was given some pre-medications which along with the sedation medication he received earlier, dilantin, and a bunch of other meds has pretty well knocked him out this evening. He is sleeping well tonight, and his blood pressure and pulse are normal. Please pray for Tommy's new cells to GROW and for good news from all these test they have done on Tommy. 9 Dec 99 (Transplant Day) Tommy had a very rough day today and gave us quite a scare. He was fine in the morning but by the time of his transplant, 1:00 pm, his blood pressure was high and it was not responding as usual to the blood pressure medicine. He was given some lasix to help him release some excess fluid which did help to lower his blood pressure but it was still higher than normal. At 1:00 pm his nurse started his cord blood transplant. It was done in his room and consisted of hanging a small bag containing the cord blood and gravity feeding it through one of his central lines over about a 55 minute period. See Photo Album. During the transplant his blood pressure rose again and he indicated his head hurt. After the transplant was completed he was given more blood pressure medicine but his pressure did not drop much. At around 3:00 pm he started having seizures. His eyes were turned to the far right and were glazed, and he was non-responsive. The seizures would last for several minutes then he would become more responsive for a short while before drifting off again with a glazed look in his eyes. They gave him some anti-seizure medication and hooked up an oxygen "blow by" to help increase the oxygen saturation level in his blood. By around 4:30 pm he was improving. They did an EEG of his brain and had a neurologist look at him. Tonight he seems better and his blood pressure is normal, however, he is very restless from the dilantin (anti-seizure drug) they gave him. He is constantly tossing and turning, and can't seem to relax and fall asleep. Also, his pulse is higher than normal. The plan is to do an MRI of his brain tomorrow. The doctors think that the seizures may be caused by a combination of his high blood pressure and a graft-versus-host prophylaxis drug called cyclosporine. They have stopped his cyclosporine and are substituting another drug called FK506. They said that seizures like this are common with bone marrow transplant patients and that they do not think any permanent damage was done to his brain. Today starts the long wait for the new transplanted stem cells to migrate to his bone marrow and start producing new blood cells. Please continue to pray for Tommy. 8 Dec 99 (Day T-1) Tommy received another dose of Anti-Thymocyte Globulin (ATG). This drug is given to kill lymphocytes (a type of white cell). His white cell count is dropping and is expected to continue to drop over the next few days from all the ATG and cytoxan he has received. His white count today was .9 k/ul. Tommy got out of his room three times today, each time walking one lap in the hall. His blood pressure at times was elevated but it responded well to blood pressure medicine. He has been doing pretty well so far with his mouth care which is required four times a day. He earns stickers each time he does it. So far everything is on track. Tommy is scheduled to get his transplant (i.e., donor umbilical cord blood) tomorrow. Please pray that Tommy does not get any infections over the next several weeks while his white counts are low, and that the new donor cells he will receive tomorrow will successfully engraft in his bone marrow. 7 Dec 99 (Day T-2) Tommy had a good day today. He received his last dose of cytoxan and another dose of ATG and tolerated them very well. In addition, he had the dressing changed on his central lines and did an excellent job of remaining still during the procedure!! His hospital school teacher came by today and he had a good session with her. He got out of his room twice today, each time walking one lap in the hall. He did not have any blood pressure problems today. His white cell count is dropping which is what they expect and desire at this point in the pre-transplant conditioning process. Today's white cell count was 1.1 k/ul which is lower than it was at this same point during the first transplant. The lower his white cell count goes the more susceptible he is to infections, but this is what's required in order to help the new donor cells he will be getting to engraft in his bone marrow. Please pray for Tommy to continue to do well and to not get any type of infections (e.g., bacterial, viral, fungal, etc.). 6 Dec 99 (Day T-3) This morning Tommy received a transfusion of red cells due to his low hemoglobin level. This transfusion along with all the other IV meds and fluids he has been getting resulted in Tommy having an elevated blood pressure (160/100) and a very painful headache. His blood pressure dropped back to normal and his headache was gone shortly after they gave him some blood pressure medicine. Tommy then received his third dose of cytoxan and another dose of ATG. He tolerated these well and had no more problems with headaches or high blood pressure. They are giving him lasix to help him release the excess fluid he is retaining in his body. He walked one lap down the hall and back and played some with Mike Perry, a hospital volunteer. Also, Amy Miller, his official "Best Buddy" visited for a couple hours this evening. Other than this morning, Tommy had a pretty good day. 5 Dec 99 (Day T-4) Tommy received his second dose of cytoxan and another dose of ATG and tolerated both very well. He also received a transfusion of platelets today. All these IV infusions along with the extra IV fluids that are given with chemotherapy are resulting in some fluid retention in his body. They are giving him a drug called lasix to help him release this excess fluid. Tommy spent most of the day in bed. He did go out of his room once today and walked 1 lap, down the hall and back. So far everything is on track. Please pray that Tommy does not develop any complications resulting from this chemotherapy. 4 Dec 99 (Day T-5) Tommy received his first dose of cyclophosphamide (also called cytoxan) and tolerated it well. Most of the bad side effects of this chemotherapy drug will start showing up in a week or so. He will get three more doses of this drug, once a day for the next three days. He also received another dose of Anti-Thymocyte Globulin (ATG) and did well with it. However, by early this evening he was feeling nauseated. They gave him an anti-nausea IV drug which helped. Our hearts were very saddened with the news that Kevin Hagen, a very, very, special little boy who was in the room next to Tommy during Tommy's first transplant, died this afternoon on his 6th birthday, from complications from his cord blood transplant. Kevin had been in the Pediatric Intensive Care Unit (PICU) for a long time struggling to survive viral infections to his lungs. Please pray for Kevin's family as they struggle with the loss of their son. 3 Dec 99 (Day T-6) Tommy had a good day. The countdown has started to the transplant date (T Day) of 9 Dec. Today was day "T minus six" (T-6). Tommy had an EKG, a chest xray, a nasal virus culture, and several labs drawn. He also received his first dose of Anti-Thymocyte Globulin (ATG) which he tolerated very well with no fevers or rashes. He is receiving a lot of IV fluids in preparation for the chemotherapy drug cyclophosphamide which he will be started on tomorrow. Cyclophosphamide (also called cytoxan) is very hard on the body. Expected side effects include low blood counts, hair loss, nausea, vomiting, mucositis (sores on the lining of the mouth, esophagus, stomach, and intestines), irritation of the bladder and kidneys, burning on urination, and problems with retaining fluids. Tommy did not receive this chemotherapy drug during his first transplant. He will have an EKG done each day he gets this drug to ensure the drug is not affecting his heart rhythm. 2 Dec 99 Tommy returned to the Pediatric Bone Marrow Transplant Unit at Duke University Hospital today proudly wearing his protective mask and ready to begin the process of receiving another cord blood transplant. We returned praying that one day soon we will be able to leave the unit with Tommy healthy and growing new donor blood cells. The pre-transplant conditioning regime (i.e., chemotherapy) will be stronger this time and thus will be harder on Tommy's body (e.g., heart, lungs, liver, kidneys, bladder, mouth, esophagus, stomach, intestines, etc.) Our prayer is that the chemotherapy will be sufficient to kill/supress his immune system so that engraftment will occur without causing serious damage to his body from his dyskeratosis congenita. I have moved all the previous history from the first transplant (2 Aug - 30 Nov 99) to a separate page which can be accessed from the "History" button above. We truly appreciate all the prayers for Tommy the past several months and request that you continue to pray for him as he goes through this transplant process again. |
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