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History
30 Nov 99 (Day T+71) Tommy received an IV infusion of human immunogloblins (IVIG) and had the dressing changed on his central lines. They thoroughly examined him and he checked out healthy enough to undergo a second transplant. The plan is to admit Tommy this Thursday, 2 Dec, and begin chemotherapy on Friday, 3 Dec. If any of the ongoing blood test show donor cells (i.e., from the first transplant) then they will call off the second transplant. These test results should be in by this Thursday. To help ensure engraftment for this next transplant they will use a stronger conditioning regime of chemotherapy to kill/suppress his immune system. They will use low doses of cyclophosphamide (in place of fludarabine) and will give more doses of Anti-Thymocyte Globulin (ATG). The key to all this is that his immune system must be lowered enough to get engraftment to occur but not at the expense of tearing up his body and creating serious complications from the dyskeratosis congenita disease. One of the things this disease does is hamper the body's ability to repair damaged DNA. Too harsh of a conditoning regime could result in DNA damage to certain tissues and lead to serious complications. Please continue to pray for Tommy and his friend Kevin Hagen. Kevin is still in the Pediatric Intensive Care Unit (PICU) and has a virus which is damaging his lungs. 29 Nov 99 (Day T+70) Tommy's platelet count was 14,000 today so they gave him a transfusion of platelets. Dr. Kurtzberg told us the colonies from the progenitor cell assay study of his bone marrow were not growing well and that this is more consistent with non-engraftment. She will be seeing Tommy in the clinic tomorrow and will check him over thorougly to ensure he is not sick with a virus or anything, then we will decide where to go from there. She does not want to start another round of chemotherapy for a second transplant if he is sick with anything. The HLA (Human Leukocyte Antigen) testing of his blood for donor cells from last week (24 Nov) is still not done, but hopefully will be done by tomorrow afternoon. Dr. Kurtzberg is updating the searches of the cord blood banks to ensure that they get the best possible unit of cord blood should we have to proceed to another transplant. If a second transplant is necessary and Tommy checks out healthy tomorrow, then the plan would be to admit him to the hospital this Thursday, 2 Dec, and start chemotherapy on Friday, 3 Dec. Please continue to pray for Tommy and for Linette and I to make the best decisions possible for Tommy's health. 24 Nov 99 (Day T+65) Yesterday Tommy received a transfusion of red cells and an IV infusion of human immunogloblins (IVIG). They told us that there were not enough white cells in the bone marrow aspirate they drew last week to perform the DNA test for donor cells.???? They also told us that they did not perform a biopsy of his bone marrow last week at the time of the bone marrow aspirate.???? We were lead to believe that both the aspirate and biopsy would be done, and thought both had been done until we were told otherwise yesterday. We have still not received a satisfactory answer on this issue. They did tell us that there were enough cells collected in the aspirate for the progenitor cell assay study but they did not have any results back on it yet because it takes 10 days to grow the colonies of cells. So, we still do not know if there are any donor cells in Tommy's bone marrow and we do not know what the plan is for Tommy. We will continue trying to get some answers this week, and on and on and on it goes.............. Please continue to pray for Tommy and his friend Kevin Hagen. Kevin is still in the PICU in very serious condition. 20 Nov 99 (Day T+61) We have not heard any results yet from the DNA test for donor cells in Tommy's bone marrow. Tommy is doing fine and is enjoying being home for a few days. Please pray for donor cells to be growing in his bone marrow and that Tommy will not have to go through a second transplant. Thanks for all the cards, e-mails, and phone calls of encouragement. Also, please continue to pray for Kevin Hagen who is still in the PICU in very serious condition. 18 Nov 99 (Day T+59) Tommy received a platelet transfusion today. They told us we could take Tommy back home to Virginia for a few days provided we did not take him to any crowded places or around anyone who was sick. He still has to wear his protective mask whenever he is outdoors or any place other than home. Late this afternoon we drove back to Virginia. On Tuesday, 23 Nov, we will have to return to Duke to have his blood counts checked and to pick up some IV medication from the home health care company in Durham. If necessary, they can give him a platelet or red cell transfusion that day. We will return back to Virginia that same day and hopefully will be able to stay home until Sunday, 28 Nov when we will have to drive back down to Durham. 17 Nov 99 (Day T+58) Tommy received an IV infusion of IVIG (immunogloblins from human blood) and another IV drug which is given to help prevent pneumonia. His platelet count was lower today and thus he will probably receive a platelet transfusion tomorrow. Please continue to pray that Tommy is engrafting and that he will not have to go through a second transplant. We also ask that you pray for Kevin Hagen, a five year old boy who was in the room next to Tommy in the transplant unit and is currently in the PICU (Pediatric Intensive Care Unit) in very serious condition. 16 Nov 99 (Day T+57) The DNA blood test results came back on the blood taken at Day T+50 and again there were no donor cells present. They performed a bone marrow biopsy/aspirate today and they will do the same DNA test on it to see if donor cells are present in his bone marrow. The DNA test results could be back by this Friday, 19 Nov. They will also do a progenitor cell assay study on the bone marrow to see if it will grow colonies of progenitor cells. This study will take about 10 days to complete. If the DNA test of the bone marrow shows donor cells present then we will continue to wait for the donor cells to show up in his bloodstream. If there are no donor cells in the bone marrow then the plan is to admit Tommy to the hospital sometime during the week of 29 Nov and begin chemotherapy for a second cord blood transplant. Tommy did well with the bone marrow biopsy/aspirate. He also had the dressing changed on his central lines. They are not going to change any of his IV or oral medications at this time. Tommy's platelet count was 30000 today and thus he will need another platelet transfusion soon. Please continue to pray that Tommy is engrafting and that he will not have to go through a second transplant. We truly appreciate the cards, e-mails, and phone calls of encouragement we have received!! 9 Nov 99 (Day T+50) We unfortunately have very disappointing news to report. The DNA blood test results came back today (on the blood taken at Day T+43) and there were no donor cells present. They drew blood today to repeat this same test and we should have the results back by next Tuesday, 16 Nov. If no donor cells are present then they will do a bone marrow biopsy/aspirate that day (16 Nov), and we will have to wait yet another week in order for the DNA results to come back on it. If this test also reveals that the bone marrow does not have donor cells then Tommy will have to go through another cord blood transplant, which means back in the hospital and starting over with chemotherapy, transplant, waiting, etc........ (too depressing to even think about). Without donor cells there is no alternative to a second transplant as his bone marrow is not producing adequate blood cells and he is transfusion dependent. If a second transplant is required they will want to start it very soon while Tommy's immune function is still low, probably the week following Thanksgiving. We started this whole transplant process on 2 Aug 99 and it is taking a heavy toll on all of us, especially not knowing if we have had a successful transplant and now having to wait possibly two more weeks before knowing for sure if a second transplant is required. It is hard to even imagine having to take Tommy through all this again. Also, by the end of this month I will have completely run out of paid leave (i.e., annual leave and allowable sick leave) from my federal civil service job at Fort Lee, VA. I have met with the Fort Lee CPAC (Civilian Personnel Advisory Center) and will submit an application to become a donated leave receipient. We thank God that Tommy has survived this transplant so far with no serious complications. We still have to be very careful where we take him and to whom he is exposed because his ability to fight infections is very weak. Tommy has been very good about wearing his protective mask when we go to clinic and we are very proud of him!! As I know you have been doing, please pray for Tommy to engraft very, very, quickly and start producing donor blood cells. 8 Nov 99 (Day T+49) We are still waiting for the results from the blood test for donor cells. Tommy is still doing great. We are extremely weary from the long wait for evidence of donor cells. Please pray that Tommy is engrafting and that donor cells are present in his blood. 5 Nov 99 (Day T+46) We did not get the results today from the blood test for donor cells. Hopefully we will get them Monday. Tommy's blood counts and other labs are fine and he is doing great. Please continue to pray that he is engrafting. 3 Nov 99 (Day T+44) Tommy had a good day today. He received a transfusion of platelets and then had his peg tube button replaced. He did an excellent job of remaining still while the nurse replaced his peg tube button in his stomach!! His energy level was pretty high today and he played alot. He had a good time with his teacher while he was at the clinic receiving his transfusion. His uncle Harry had a business trip to Greensboro and was able to drive to Durham to visit for a little while today. Tommy really enjoyed the visit!! 2 Nov 99 (Day T+43) We had a very long day in the clinic but were able to talk with Dr. Kurtzberg and get answers to our questions concerning the plan for Tommy. They drew blood today for another test to see if donor cells are present. The test they are doing this time is far more precise (i.e., DNA based) than the tests that were done on Days T+14 and T+35, and thus will be more likely to show donor cells if any are present. The results from this test should be available by this Friday or next Monday. If no donor cells are present, then they will do a bone marrow biopsy/aspirate on Tuesday, 9 Nov to see if donor cells are present in the bone marrow. Tommy's platelet count today was 21,000 so he will get a platelet transfusion tomorrow. In addition, after the platelet transfusion they will replace the peg tube button in his stomach. Also, they are not going to reduce any of his IV medications at this time. His blood pressure today was better than it was yesterday. The immune function test they performed on Day T+28 showed a very low PHA level which is good news and indicates that conditions are favorable for engraftment to occur. It is possible that engraftment has begun but is occuring at a slow rate and was not detectable by the earlier test that were performed. Please continue to pray that Tommy's cells will GROW, GROW, GROW!!! Also, we ask that you pray for Kevin Hagen, a five year old boy who was in the room next to Tommy while he was in the hospital. Kevin is now in the PICU (Pediatric Intensive Care Unit) in very serious condition fighting for his life. 1 Nov 99 (Day T+42) Tommy is running a higher than normal blood pressure, 130/90. They want to see what it is tomorrow before putting Tommy on blood pressure medication. They were planning to reduce the dose on one of his IV drugs tomorrow (solu-medrol) which might be what is causing the high blood pressure. His platelet count is also getting low, today it was 35,000. 31 Oct 99 (Day T+41) No change in status for Tommy from yesterday. He is on several oral and IV medications which keeps us very busy throught the day and evening. His last drug each day is given at midnight. We also have to take him to Duke each day to be seen by the doctors. Please continue to pray for the transplanted stem cells to engraft in his bone marrow and start producing new donor blood cells. 30 Oct 99 (Day T+40) Tommy is still doing great. His blood counts and lab results look fine. Charlie and Marsha Barron from our home congregation came down today to help out with Tommy for the weekend. Please continue to pray that Tommy will engraft soon. 29 Oct 99 (Day T+39) Tommy is still doing great. We do not have any new information concerning the lack of donor cells. We pray that Tommy will engraft soon and that he will not end up back in the hospital. Tommy's blood counts and lab results look fine. 28 Oct 99 (Day T+38) We received some disappointing news today. The special blood test on Day T+35 indicated no new donor blood cells in Tommy. We have not heard directly from Dr. Kurtzberg, but it appears the plan will be to continue waiting and allow more time for engraftment to occur. We have lots of questions and few answers right now. Things will be clearer once we talk with Dr. Kurtzberg. Tommy is doing great and really likes being out of the hospital. His energy level has picked up significantly since being discharged. He did a super job of wearing his protective mask when we went to the outpatient clinic today!! Please pray for the transplanted stem cells (i.e., cord blood) to engraft in his bone marrow and start producing new donor blood cells soon. 27 Oct 99 (Day T+37) We are very tired but have survived our first complete day as outpatient post transplant!! Our room at the Homestead Village is now cluttered with all kinds of various medical stuff and the workload on us is tremendous. Tommy continues to do well. His blood counts and lab work were fine. We have not received the test results on whether or not Tommy has any donor blood cells. 26 Oct 99 (Day T+36) We were discharged from the hospital this afternoon!!! We are now in outpatient status and thus we will have to draw blood daily for labs, administer all IV and oral medications, change dressings, flush his central lines, change caps, feed him four times a day via his feeding pump, etc ....... and then on top of all of this go to clinic for several hours every day to be seen by the pediatric bone marrow transplant doctors!!!! This morning while still inpatient, Tommy was seen by pediatric GI team and they replaced the "button" (i.e., the part that goes into his stomach) with one with a slightly shorter shaft length. This will provide a better seal and help prevent leakage from the stomach. They said the peg site looked irritated but was not infected. We were discharged in the afternoon and Tommy was really happy to get out of there!! The home health care compay met us at our room at the Homestead Village and brought us some medical equipment and supplies. I had to make some trips back to the hospital in the evening to pick up some things that the hospital staff failed to give us before we left such as a prescription for pain medication, some lab tubes for blood, and Tommy's unused oral medications. I also had to go to the drug store to get a bunch of prescriptions filled. Fortunately they were open till midnight. Tommy is doing great, however we are absolutely wore out. Tommy wore his mask with out any problem when we were discharged!! Everyone was so proud of him!!! 25 Oct 99 (Day T+35) Tommy did not get discharged from the hospital today. They are now saying he should get out tomorrow if his daily blood counts and labs look alright. He received a platelet transfusion this morning because his platelet count had dropped to 17,000. They also want a pediatric GI doctor to examine his "peg site" (i.e., the place where his feeding tube enters the front of his stomach) because there has been some drainage around it lately. Hopefully this will happen tomorrow morning so that he can get discharged tomorrow. Tommy continues to have a slight rash which periodically comes and goes and is still feeling tired. He did walk some in the hallways with his mask on!! Please continue to pray for Tommy's transplanted cells to engraft and start producing new blood cells. 24 Oct 99 (Day T+34) Tommy continues to have a slight rash which periodically comes and goes. He is also still feeling tired and lays in his bed alot during the day. They do not know for sure what is causing this because his lab results all look fine. It could be that Tommy's wanting to lay around all day is just a result of boredom fom this long hospital stay. If he continues to be tired all the time after we have been discharged from the hospital, then they will know that it is caused by something other than "hospital boredom." Concerning the slight rash which comes and goes, they are not too concerned about it as he does not have any fever or itching associated with it. They said it could be caused by one or more of the medications he is receiving and that this rash is not necessarily a sign that he is engrafting. Tommy's platelet count today was 21,000 so he will need a platelet transfusion soon. He did walk around the unit some today wearing his mask!! Amy stayed with him for a few hours this afternoon so we could run some errands. Please continue to pray that Tommy's transplanted cells will engraft and start producing new blood cells!! |
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23 Oct 99 (Day T+33) Tommy still has a slight rash which periodically comes and goes. However, he does not have any fevers. Also, he is still feeling tired and lays in his bed alot during the day. His platelet count today was 30,000. Tommy did walk around the unit some today wearing his mask!! Amy, his "best buddy" stayed with him for a few hours this evening so that we could go out to the mall. The plan is still for Tommy to be discharged to outpatient status on Monday, 25 Oct. Please continue to pray for Tommy's new cells to GROW, GROW, GROW. 22 Oct 99 (Day T+32) Tommy is still feeling tired and still has a slight rash which periodically comes and goes. They have changed the GCS-F drug he has been receiving from every day to every other day. His platelet count is getting low again, today is was 32,000. Tommy is continuing to do well with his mask. He wore it for a good while today while walking around the unit. Thanks so much for all of your prayers. God is answering them!! Please continue to pray for Tommy's transplanted cells to engraft and start producing new blood cells!! 20 Oct 99 (Day T+30) Tommy is still feeling tired and still has a slight rash which periodically comes and goes. His blood counts and other lab work is fine. We still do not know if engraftment has occured or not. This Monday they will draw the blood for the special test to determine if donor cells are present in his blood. The plan is for Tommy to be discharged to outpatient status on Monday, 25 Oct. This week has been very hectic for us trying to get things in place for discharge, such as verifying insurance benefits, coordinating home health care, selecting and registering with a local drug store for prescriptions, etc... The outpatient responsibilities we will have to take on are enormous and will be very stressful and tiring on both of us. Tommy wore his mask again today when he went out into the hallway for a walk!! Everyone here on the unit is so proud of Tommy!! 19 Oct 99 (Day T+29) Some great news!! Tommy wore his mask today!! This is the first time Tommy has willingly wore his mask since he was admitted on 13 Sep 99. See the photo album for a photo of Tommy wearing his mask!! This is a very important goal for Tommy because it is critical that he wear his mask after he is discharged from the hospital. He is still feeling tired and still has a slight rash which periodically comes and goes. His blood counts and other lab work is fine. Please continue to pray for Tommy's transplanted cells to engraft and GROW, GROW, GROW!!! 18 Oct 99 (Day T+28) Tommy is still feeling tired. He is still getting a slight rash on his cheeks and on other parts of his body which comes periodically and then disappears in a few minutes. They say it might be some early signs of engraftment occuring, but they cannot be certain. The rash or flushing in his cheeks is not bothering him and he does not have any fevers. His blood counts and other lab work are fine. They sent some blood to the lab for an immunological study to determine how well his immune system is "functioning." It will take seven days to get the results back from this study. Thanks to the creative efforts of Carl Evans, the Child Life Specialist, Tommy is finally beginning to make some progress on wearing his protective mask!! Carl came up with the idea of using a Polaroid camara and taking pictures of Tommy next to some of his stuffed animals wearing a mask, and then having Tommy hold the mask to his face to have his picture taken. It worked great, and Tommy loved watching the polaroid pictures develop. From there we were able to get him to hold the mask briefly to his face for some simple rewards such as getting to watch TV, or getting a Winnie the Pooh band-aid to put on his finger. The doctors are also telling us that by the end of this week or early next week we should be discharged from the transplant unit and begin outpatient status. They think Tommy's neutrophil count (i.e., one type of white cell) is high enough to provide him protection from infection outside of the transplant unit provided we use some protective measures such as avoiding crowds, having Tommy wear a mask, etc... The way this would work is we would take on the responsibility for giving Tommy his oral and IV drugs (e.g., Solu-Medrol, Cyclosporine, GCS-F), drawing blood every morning for lab testing, changing the dressing on his central lines, and taking him to the clinic everyday for examination by doctors on the transplant team. Wow!! This outpatient status would most likely begin even before we had the results back from the special blood test that determines if engraftment has occured (scheduled for Day T+35). They can always re-admit Tommy to the transplant unit if it becomes necessary (e.g., infections, graft-versus-host-disease, second transplant, etc.). They told us that they were not trying to rush us out the door, and that we would not be discharged before everything was in place and we were trained and ready. Other than feeling tired, Tommy had a good day. His visitors today were Amy Miller and Joyce Tiffany. 17 Oct 99 (Day T+27) Tommy has felt pretty tired most of the day. He will get out of bed to play for a few minutes at a time and then will crawl back in bed. A couple times during the day his cheeks would get flushed for several minutes and then would return to normal. His temperature has remained normal all day. They are monitoring this but don't seem concerned. His blood counts and other lab work look fine. Amy stayed with him for a couple hours early this afternoon and Brenda Riddle stayed with him a couple hours this evening. We worked on the mask issue with him but he still will not wear one. Although they are currently letting him walk around the unit without a protective mask (because of his current white cell count), he will still have to wear one once he gets discharged from the protected environment of the transplant unit because his immune system is still weak. Please pray for Tommy's transplanted cells to GROW and for him to overcome his fears of wearing a mask. 16 Oct 99 (Day T+26) Tommy received a platelet transfusion this morning because his platelet count was down to 15,000. He felt pretty tired most of the day. Lee Hagelbarger stayed with him a couple hours this morning and Brenda Riddle stayed with him a couple hours this evening. Tommy did go out in the hallway and ride the big wheel for a little while this evening. There were no significant changes in his blood counts or other lab work. 15 Oct 99 (Day T+25) Tommy's hemaglobin level and red cell count was up today as a result of the transfusion of red cells he received yesterday. His platelet count has dropped to 25,000 so he will be needing another platelet transfusion soon. Diane Baker stayed with Tommy a couple hours this morning and Dale and Jan Morris stayed with him a couple hours this evening. We really do appreciate these breaks we get!! Tommy had much more energy today and played more today. It is truly amazing just how well he takes all this. Please continue to pray for his new cells to GROW!!! 14 Oct 99 (Day T+24) Tommy is still doing great so far with his transplant. He received a transfusion of red blood cells today because his hemaglobin level was 7.7 g/dl. They transfuse red cells anytime the hemaglobin drops below 8.0 g/dl. His platelet count today was 31,000. He will get a platelet transfusion when it drops below 20,000. His other lab results were fine. Tommy felt pretty tired most of the day from the transfusion and associated pre-medication he received. 13 Oct 99 (Day T+23) Tommy is now 23 days post transplant and is still doing very well. He has not had a single fever or any infections since he was admitted to the transplant unit on 13 Sep. We are waiting for the transplanted cord blood (which contains the donor stem cells) to engraft in his bone marrow and start producing new blood cells (i.e., red cells, white cells, and platelets). During this waiting period for engraftment, Tommy is managing to hold on to some of his own blood cells (specifically his red cells and some types of white cells), due primarily to the G-CSF (Granulocyte Colony Stimulating Factor) which he has been receiving. His red cell count is still decreasing, but at a slow rate, and his total white cell count has actually increased from the GCS-F. However, his immune system is weak and he lacks an adequate quantity of certain types of white cells that the GCS-F does not have any effect on, but it has been O.K. lately for Tommy to go into the hallway and lounge without a protective mask. They are planning to check his blood again for the presence of donor blood cells on Day T+35. It will take about three days from this date to get the results back. The doctors say it will be O.K. for Tommy to have a mixture of his own blood cells and the new donor blood cells, and that eventually he should end up with all of his blood cells being donor cells. Tommy had a good day and played some in the hallway and lounge. 12 Oct 99 (Day T+22) Tommy is still doing very well with his transplant. There are no significant changes in his blood counts or other lab work. He received another dose of IVIG (i.e., human immunoglobins) today. Tommy played some in the hallway and lounge, and Amy visited with him for a few hours this evening which gave us a chance to get out and go to the mall. 11 Oct 99 (Day T+21) Tommy is still doing very well with his transplant. There are no significant changes in his blood counts or other lab work. Charlie and Marsha Barron came down yesterday and stayed with Tommy last night to give us a night off together. Howard and Kathy Burnette and Lillian Jozwiak (Tommy's grandma) came down today and visited with him for a few hours. Tommy was very happy to see all these visitors and had a great time!!!! See the photo album for pictures of their visit. 9 Oct 99 (Day T+19) Tommy continues to do very well with his transplant. They have stopped the continuous infusion of pain medication and have left only the push button device for administering medication as needed. His white cell count was high enough today for him to be able to leave his room and play in the hallway and lounge without having to wear a protective mask. Amanda Tawney from the Durham Church of Christ stayed with Tommy for a few hours this evening. It was nice to get a break and Tommy had a great time!! |
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8 Oct 99 (Day T+18) Special testing of Tommy's blood indicates that engraftment (i.e., production of new donor blood cells) has not occurred yet because there were no donor cells present in the blood. The blood they tested was drawn on day T+14 which is a couple weeks earlier than usual for engraftment to occur. They will repeat this test in two weeks. Until then we continue to wait and pray for engraftment to occur. Tommy received a transfusion of platelets today because his platelet count had dropped to 17000. He is still on the IV pain medication pump which is helping him feel better. He is doing much better with his mouth care and oral medications. He was able to leave his room today and play in the hallway and lounge without having to wear a protective mask because his white cell count was high. This was the first time since 20 Sep that Tommy has left his room other than the one time to attend his birthday party. He had a great time playing with the big wheel tricycle in the hallway!! He will still not wear a mask. They are pleased with how Tommy is doing so far and are telling us to continue to "hang in there" as we wait for the transplanted stem cells to engraft in his bone marrow. 5 Oct 99 (Day T+15) The doctors are pleased with how Tommy is doing so far. His lab results indicate that his kidneys and liver are working fine and his blood counts show a rise in the number of white cells. They cannot say at this time whether these white cells are new donor cells, or some of Tommy's pre-transplant white cells which could have increased in number as a result of the G-CSF (Granulocyte Colony Stimulating Factor) he has been receiving, or is combination of new donor cells and pre- transplant white cells. We will have to wait for the results from the special blood test they drew on 4 Oct 99 to know whether any donor blood cells have started to appear. Tommy is still on the IV pain medication pump which is helping him feel better. He did his mouth care today and took some of his oral medication. He still will not wear a mask and thus cannot leave his room to go into the hallway or the lounge. He had good sessions with the occupational therapist and the hospital school teacher. 4 Oct 99 (Day T+14) Tommy had a good day today. He played some with his toys and was in a much better mood. He did his mouth care and took some of his oral medication. The pain medication he is now receiving is helping tremendously. The doctors are pleased with how Tommy is doing so far with his transplant. Today they sent some of his blood to the lab for special testing to determine if there are any new donor blood cells showing up. This test is being done to look for some possible good news of earlier than usual engraftment occuring and not because of anything bad happening. We will not get the results from this test for a couple days. Please continue to pray for Tommy and all the children and their families in this pediatric bone marrow transplant unit. Early this morning our hearts were saddened with the news that Katie Floyd, a sweet two year old girl just two doors down the hall, died from complications with her transplant. It is frightening how quickly the health of patients on this unit can change. The entire bone marrow transplant process, with the chemotherapy and many other drugs constantly being given to these children, is very hard on their bodies. We are very thankful for the many prayers of so many for Tommy. 3 Oct 99 (Day T+13) Tommy began the day feeling very tired and irritable. He would not take any of this oral medication or do any of his required mouth care. This afternoon Tommy was started on an IV pain medication pump to help relieve pain he is experiencing in his mouth and throat. This pump continuously infuses a small dose of pain medication. 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 and began playing with his toys. He did not take his usual nap this afternoon but we were just glad to see him out of bed and playing. Linda Morgan stayed with him this afternoon so his daddy could get a break for a few hours and go to the Sunday night worship service at the Durham Church of Christ. 2 Oct 99 (Day T+12) Tommy has not felt good today. He only got out bed a few times to play with his toys. Tommy received a transfusion of platelets this morning because his platelet count had dropped to 20,000. This afternoon he was given a dose of the chemotherapy drug ATG (Anti-Thymocyte Globulin). He was given a lot of benadryl and tylenol during the day to help prevent reactions and fevers to the platelets and ATG. This could account for his feeling so tired all day. In addition, he would not do any of his mouth care today. Since Tommy can't talk it is sometimes difficult to know exactly what is bothering him. He may be feeling some pain in his mouth and throat. They gave him an IV pain drug tonight which appears to be helping him. Tommy had some visitors come and stay with him for a few hours today. Lee Hagelbarger came in the early afternoon and Amy Miller, his official "Best Buddy," came this evening. Tommy really enjoyed their visits!! 1 Oct 99 (Day T+11) The Attending Physician is very pleased with how Tommy is doing so far. His lab results look fine and his counts are still high enough to provide him some protection from infections. His platelet count dropped to 24,000 today and soon will be low enough to require a transfusion of platelets. Tommy will get another dose of ATG (Anti-Thymocyte Globulin) tomorrow. This drug is given to kill lymphocytes (a type of white cell) in order to help prevent his immune system from rejecting the transplanted cells he received. Tommy played in his room and watched some videotapes. He had a good session today with his "hospital school" teacher and made a nice watercolor painting to put up on his wall. 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!! 30 Sep 99 (Day T+10) Tommy is now 10 days post transplant and continues to do very well. His blood counts (i.e., red cells, white cells, and platelets) are steadly dropping as expected while we wait for the new transplanted cells to engraft. His platelet count was 28,000 today and soon will be low enough to require a transfusion of platelets. His white cell count today was 3.3 which is still high enough to provide some protection from infections, however it is continuing to drop. Please pray for the transplanted cells to engraft soon and start producing white cells, red cells, and platelets. Tommy will still not wear a protective mask and thus cannot leave his room. Tommy had a good session today with his "hospital school" teacher. He also had fun making buttons with his picture on them. Several of the nurses are proudly wearing them!! 27 Sep 99 (Day T+7) Tommy continues to do very well with his transplant. He has not spiked a fever since being admitted to the transplant unit on 13 September! However, his blood counts are dropping and when the white cell count gets very low he will be susceptible to infections until the transplanted stem cells engraft in his bone marrow and start producing new white cells. Tommy has been feeling more tired lately and lays down more in his bed. His white cell count was still high enough today for the Attending Physician to allow Tommy to go to his birthday party without having to wear a protective mask. This was great news because Tommy will still not wear a mask. We had the party in the Patient Family Lounge and decorated it with a Blue's Clues theme (Blue's Clues is a children's TV program on Nickelodian which Tommy really likes). We decorated the entrance to the lounge to look like the front of Blue's house. We had a purple front door, red curtains on the windows, an apple tree made of contruction paper and tissue paper, and a purple mailbox. Tommy was so thrilled when he saw it!! The inside of the lounge was also decorated and Linda Morgan brought a very nice Blue's Clue birthday cake!! Several members of the staff, a few patients and their parents, and Tommy's grandma and grandpa (Burnette) came to the party. Tommy had a great time blowing out the candles and opening his presents!! After the party he returned to his room and had a good nap. See the photo album for pictures of his birthday party. 26 Sep 99 (Day T+6) Tommy is doing very well so far. He still has a slight rash which they are treating with benadryl. Tommy still will not wear a protective mask and thus he could not leave his room today. Tommy seemed to be more tired today than usual which they think is normal considering he had ATG yesterday. Tommy's grandma and grandpa (Burnette) stayed with him most of the day which enabled us to go out to lunch and to attend church this evening. Amy, his "best buddy" also came to visit with him today. Tommy is excited about the birthday party he will have tomorrow! 25 Sep 99 (Day T+5) Tommy is doing very well for five days post transplant. He did receive a dose of ATG and by evening had developed a slight rash on some areas of his face, chest, stomach, and back. This is not unusual and not serious. They are giving him benadryl which is helping. Today was Tommy's birthday!! He is now five years old!!! Because Tommy had to be connected to a cardiac monitor while he received the ATG (which is a slow infusion over several hours), we will have his birthday party this monday afternoon in the Patient Family Lounge here in the transplant unit. All the patients in this unit and their parents are invited, however several probably will not be able to attend because either they are too sick or just do not feel good enough. Tommy did wear his mask for a couple seconds today in order to go out into the hallway to get a nice present from June, one of the nurse coordinators that Tommy really likes!! Please pray that Tommy will continue to improve with his mask so that he can attend his birthday party monday afternoon!! His grandma and grandpa (Burnette) arrived today from Tennessee for a few days visit and he way very glad to see them!! 24 Sep 99 (Day T+4) Tommy continues to do well. He received a transfusion of platelets today because his platelet count had dropped to 20,000. He still has a little rash on his face. Tommy is still afraid to wear a protective mask and thus could not leave his room today. However, he is making some progress with wearing his mask. He will wear it around his neck but he is afraid of pulling it up over his nose and mouth. Tomorrow he will receive another dose of ATG, but it will be a lower dose than what he was getting the three days prior to his transplant. 22 Sep 99 (Day T+2) The Attending Physician is very pleased with how Tommy is doing so far. He still has a slight rash but it is better than yesterday. The benadryl he is getting is helping. His blood counts are falling as expected from the chemotherapy and soon he will be vulnerable to infections until the transplanted stem cells engraft in his bone marrow and start producting new blood cells. Tommy is still afraid to wear a protective mask and thus could not leave his room today. He did muster enough courage to hold a mask up to his face for a brief second once today and was rewarded with a sticker to put on his chart! 21 Sep 99 (Day T+1) Tommy is doing pretty good for his first day after transplant. He has developed a slight rash in some areas of his face, chest, stomach, and back. They think it is a reaction from the ATG he was given the past three days and are treating it with benadryl. Tommy was started on a drug called G-CSF (Granulocyte colony stimulating factor). G-CSF stimulates the bone marrow to produce a specific type of white blood cell known as neutrophils which are needed to fight off bacterial infections. Tommy choose to stay in his room all day today because he would not wear a mask which is now required whenever he leaves his room. We are not sure why he is afraid to wear one. He will cry and fuss just at the sight of one. We think in time he will come around, especially if he wants to ride the big wheel in the hall or go to the patient family lounge! This afternoon they changed the dressing on his chest where his two central lines are located. This dressing has to be changed every 7 days and he struggles and kicks every time it's done. Amy, his "best buddy" came to visit him this evening. Tommy had a great time and we got a chance to go out to a restaurant for dinner. |
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20 Sep 99 (Transplant Day) What an exciting day for all of us! Tommy received his new stem cells and did great!! See the photo album for some pictures of the 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 25 minute period starting at 11:35 am. Prior to the transplant, Tommy was given some pre-medication and was placed on a cardiac monitor. His blood pressure was check before, during, and after the infusion. There were lot's of pictures taken! Gregg and Gale Elrod were here and helped take pictures. Tommy was very cooperative and had a great time! He received a very nice "Transplant Day" certificate from the Child Life Specialist along with a nice sign to put up in his room which says "Grow Cells Grow!!" Today starts the long wait for the new stem cells to migrate to his bone marrow and start producing new blood cells. Please continue to pray for Tommy's new cells to GROW, GROW, GROW!!! 19 Sep 99 (Day T-1) Tommy received another dose of ATG which he tolerated well with no fevers or rashes. The Attending Physician said Tommy was doing very well and his blood counts were where they expected them to be. Tommy is scheduled to get his transplant (i.e., the donor umbilical cord blood) tomorrow. The cord blood he will receive is a good large size unit selected by Dr. Kurtzberg from the New York Cord Blood Bank. Tommy walked up and down the halls several times and and played with the big wheel and other toys they have in the hallway. Gregg and Gale Elrod (the preacher and his wife from our home congregation) came down this afternoon. Tommy was very happy to see them!! They stayed with Tommy so we could go out to dinner and Tommy had a great time!! 18 Sep 99 (Day T-2) Tommy continues to do well. He received his last dose of Fludarabine and another dose of ATG. He tolerated both very well with no fevers or rashes. Tommy had a good time with his "Best Buddy" riding the big wheel tricycle in the hallway. Tommy had some visitors from the Durham Church of Christ which enabled us to be able to go out to a nice restaurant for dinner. Charlie and Marsha Barron from our home congregation spent the night with Tommy so we could get a good nights sleep in a real bed. 17 Sep 99 (Day T-3) The Attending Physician is pleased with how Tommy is doing so far. His lab results are fine. Tommy received the fourth dose of Fludarabine and tolerated it well. He also received his first dose of Anti-Thymocyte Globulin (ATG) starting at 4pm. They started it at a very low rate and have increased it gradually to the maximum infusion rate. This dose will not be completed till around 4 or 5 am Saturday morning. He has not had any fevers, rash, or itching so far (i.e., 12:00 midnight). This morning Tommy played some with a "big wheel" tricycle they have out in the hallway and had a good time. 16 Sep 99 (Day T-4) Tommy received the third dose of the chemotherapy drug called Fludarabine and tolerated it well. This evening he met Amy, a specially trained volunteer who has been assigned as his "Best Buddy." She is very nice and Tommy really likes her! She will be able to occasionally stay with Tommy in order to give us a break. Tommy is continuing to make progress with his "mouth care" which is required four times a day. He gets a sticker to put on his mouth care chart each time he willingly attempts it. He got four stickers today! Tommy walked up and down the halls of the unit and spent some time playing in the Patient Family Lounge. Tomorrow he will get his first dose of ATG (Anti-Thymocyte Globulin) which can cause very high fevers, skin rash, itching and possibly even more serious side effects. It will be given very slowly over several hours starting at around 3 pm. 15 Sep 99 (Day T-5) Tommy had a good day today. Tommy received the second dose of the chemotherapy drug called Fludarabine and tolerated it well. He also received an IV infusion of IVIG (immunogloblins from human blood). We walked up and down the halls of the unit several times during the day and spent some time playing in the Patient Family Lounge. One thing Tommy does not like is the special mouth care that is required several times a day consisting of brushing and rinsing with special medicated rinses. We are all working hard to encourage Tommy to do this willingly so that it will not have to be forced on him. He did make a little progress with this today. Tommy liked the nurses he had today and is beginning to build more trust in them. The hospital is on emergency alert due to the approaching hurricane and many people are nervous about the hurricane force winds we are expected to get tomorrow as the hurricane passes through North Carolina. 14 Sep 99 (Day T-6) Tommy received the first dose of a chemotherapy drug called Fludarabine. He will get four more doses, given once a day, for the next four days. He tolerated the drug well and is doing fine. Tommy was visited by the Child Life Specialist this morning and enjoyed having his picture taken for the bulletin board. Tommy did not like having the dressing changed on his chest (where his central lines are located) but he seemed to have tolerated it better today than the last time it was done. 13 Sep 99 We met with Dr. Kurtzberg for a consent session and then Tommy was admitted to the Pediatric Bone Marrow Transplant Unit. His immune system had dropped to the desired level to start the the more rigorous inpatient chemotherapy scheduled to begin tomorrow. This starts the countdown to transplant date (T Day) of 20 Sep. Tomorrow, 14 Sep, will be day "T minus six" (T-6). Tommy has been quite nervous and upset since our arrival at the unit. The nurses in this unit are very good at working with small children and helping them to not be scared. By late tonight one nurse had built enough trust with Tommy to allow an EKG to be done! Tommy was started on IV fluids and some IV drugs and had some blood drawn for lab testing. Other than being very tired and scared of what's going on, Tommy is doing fine. 10 Sep 99 Tommy had a long day at the clinic. He had some blood drawn, received another dose of chemotherapy and another IV drug which is to help prevent pneumonia. Next scheduled event is a consent session with Dr. Kurtzberg on Mon, 13 Sep followed hopefully by admission to the transplant unit that afternoon. 9 Sep 99 Tommy is feeling better today. He did not have to go to the clinic today! The dressing where he was bleeding has remained dry. 8 Sep 99 Tommy had a rough day today. He threw up his breakfast. He still had blood oozing into the dressing for most of the day requiring frequent changing of the dressing (which would set off Tommy screaming and kicking wildly each time). Late this afternoon the surgeon who put the lines in yesterday was able to stop the oozing by applying firm pressure on his chest near the right collar bone about an inch from where the incision was made. He also received a transfusion of red cells due to low hemagloblin level. He is still feeling pain from the surgery. 7 Sep 99 Tommy had blood drawn for lab testing this morning and then had surgery to have two central venous lines put into his chest. The one on the left side went in easily, however they had some difficulty with the one on the right side, but did get it in OK. He has some blood oozing into the dressing on that side. Tommy was not admitted into the transplant unit today because lab tests indicate that his immune system (T-cell function) is still not down to the desired level. He was given another dose of the same chemotherapy drug today and will get still another dose this Friday at the outpatient clinic. Hopefully this will bring the T-cell function down enough for Tommy to be admitted to the hospital (transplant unit) next Mon, 13 Sep, to begin the more rigorous inpatient chemotherapy starting 14 Sep. Tommy is feeling very tired but is doing fine. 3 Sep 99 Tommy continues to have a slight temperature with red cheeks. Dr. Kurtzberg thinks it could be from one of his prescription drugs or from some virus he may have picked up. She has now stopped one of his prescription drugs for a few days just to get it out of the picture. Tommy is scheduled for surgery on 7 Sep to receive a central venous line. The goal is to get and keep Tommy well so that this surgery will not have to be posponed again! 2 Sep 99 Tommy had a lot of blood drawn for lab testing and received another larger dose of the same chemotherapy drug he has been taking the past couple weeks. He did not like being stuck with the IV needle! Tommy developed low grade temperature later in the day. |
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30 Aug 99 Tommy developed fever of 102 and was taken to his pediatrician. He has an infection in one ear and some sinus congestion. He was started on an antibiotic and his fever has come down. Because of this infection, the surgery planned for 31 Aug has been postponed. In addition, lab tests on his immune system show that it has dropped some but not to the desired level, and thus he will have to wait at least another week before being admitted to the transplant unit to start the remaining chemotherapy drugs. The reason for starting Tommy on the mild chemotherapy drug and waiting for it to lower his immune system is so that it will be easier on Tommy once he is admitted to the transplant unit to complete the reduction/elimination of his immune system (using stronger chemotherapy drugs). This elimination/reduction of his immune system is necessary in order to prevent the rejection of the stem cells after they are transplanted. If the transplant is successful, Tommy will develop a new immune system over time. Tommy will have some more blood drawn this week for testing and will receive another dose of the same mild chemotherapy drug he has been given so far. 26 Aug 99 Had a consultation session with Dr. Kurtzberg to discuss status and plans for proceeding with the transplant. Tommy's next scheduled event is surgery on 31 Aug to receive a central venous line (hickman catheter). In addition, if lab work shows his immune system has dropped to the desired level from the chemotherapy he has received so far, then he will be admitted to the bone marrow transplant unit following the surgery to begin the next (stronger) chemotherapy drug. If his immune system has not dropped enough, then he will be given another dose of the same chemotherapy drug he has been given already and will have to wait another week as an outpatient (once discharged from the hospital) before being admitted to the bone marrow transplant unit to start the next (stronger) chemotherapy drug. 24 Aug 99 Tommy received his second dose of the same chemotherapy drug his received on 18 Aug and received IVIG (immunogloblins from human blood administered via IV). He also had more blood drawn for lab testing. He did not like being stuck with the IV needle! His platelet count is back down to 16000 (normal value should be between 150,000 and 400,000). The next scheduled event is a consult with Dr. Kurtzberg on Thursday, 26 Aug 99. 19 Aug 99 Tommy had an MRI of the brain followed by a neurosurgery consult. He was sedated for the MRI and did fine. The MRI showed nothing new or unexpected which means Tommy will not need the services of a neurosurgeon. The next scheduled outpatient appointment for Tommy is Tuesday, 24 Aug, when he will get another dose of the same chemotherapy drug he received yesterday. 18 Aug 99 Tommy received his first dose of a mild chemotherapy drug and is doing fine. 17 Aug 99 Tommy had blood drawn for lab work, a neurology consult, and a neuro development consult. He did not get his first chemotherapy drug as scheduled because the clinic pharmacy was out of the drug!(??) Should have it by tomorrow. 16 Aug 99Tommy had his hearing checked today. This was done to baseline his current hearing prior to starting chemotherapy. His hearing is fine and he seemed to enjoy the test. 12 Aug 99 Tommy completed his IV antibiotics and was discharged from the hospital in the morning. His blood infection has cleared. Tommy was very excited and very happy to be out of the hospital! In the afternoon we had a good meeting with Dr. Kurtzberg, the director of the Pediatric Bone Marrow Program, to discuss the results of his workup to date and the plan for proceeding with the transplant. Tommy's next scheduled outpatient appointment is Mon, Aug 16. 11 Aug 99Tommy is still in hospital receiving IV antibiotics. Expect to be discharged from hospital tomorrow to continue his outpatient workup. 10 Aug 99Tommy received platelets and had surgery late in the afternoon to remove his portacath, perform a bone marrow biopsy and bone marrow aspirate, and to perform an endoscopy of his esophagus and stomach. Surgery went well. Tommy continues to receive IV antibiotics. 9 Aug 99Tommy had an eye examination at the Duke Eye Center and was then admitted to the hospital in preparation for surgery. He was given another transfusion of red cells and is continuing to receive IV antibiotics. He is scheduled to receive platelets tomorrow a couple hours before his surgery. 7 Aug 99Tommy received a transfusion of red cells due to low hemoglobin concentration. Platelet count was also low (20,000). He is scheduled to be admitted to hospital on Monday afternoon, 9 Aug in preparation for surgery on Tuesday to perform an endoscopy and to remove his portacath. 6 Aug 99 Tommy was seen by immunology. He is feeling better. He continues to receive an IV antibiotic three times a day. After his immunology appointment we were able to take him to the mall which he enjoyed. 5 Aug 99Tommy was seen by urology and had a VUCG (voiding cystourethrogram) followed by a dermatology appointment. Low grade fever is back. Blood cultures taken earlier in the week indicate that he has a bacterial infection in his blood. He was started on an IV antibiotic. 4 Aug 99Fever gone. Tommy had CT of brain, sinuses, neck, chest, liver, and spleen followed by a complete skeletal survey (x-rays). He had to be sedated for this. 3 Aug 99Tommy had complete history and physical followed by pulmonary (lung) function tests. He was also seen by a pediatric GI doctor. Tommy has developed a low grade fever and is feeling tired and irritable. 2 Aug 99Survived our first day. Tommy had a lot of blood drawn for lab work this morning. This afternoon he had an echocardiogram (ultrasound of the heart) and chest xrays. 23 July 99Tommy has been taken off oxymetholone in order to give his liver a rest prior to starting the UCB transplant at Duke. Unfortunately, his platelets are beginning to drop. Platelet count today was 30000.
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