The Transplant Experience
Mason’s Dad reflects on the transplant process
but we’ll stop now so as not to get too far ahead of where we are today.Mason has been an unbelievably strong little boy over the past few days of extensive testing. We truly admire his strength. Sarah and I are dealing the best we can with the volumes of information we have been presented with over the past few days. Our family has been presented with a very serious hurdle and with the support of our family and friends we hope to tackle this and any other problems this presents. Sarah and I know we have the best family and friends and we just want to take the time now to thank all of you for the support we know each of you will provide. Mason will get through this. We will get through this. It’s just going to take some time. Please keep Mason in your thoughts in the months ahead.
September 15, 2009: Mason did not begin his chemotherapy yesterday (9/14) as originally planned. His twice a week blood test indicated trace amounts of the antibodies for the CMV virus. His test Tuesday last week showed very low levels and his test Friday was essentially good, but to error on the side of caution due to the possible ramifications the doctor and his colleagues at Duke and Sloan both agreed that
the best course of action was to treat the virus for a week (oral medication and a 3 infusion treatments) and delay the chemo/transplant schedule by a week. He continues to have his twice a week blood monitoring tests. His levels are abnormal for you or I, but for the most part have been fairly consistent for his condition. One exception has been his hemoglobin which continues to fluctuate on the low side.
As we stand now, chemo will begin Monday 9/21. He will undergo 4 days of 4x/day doses of the first drug, and then 2 more drugs subsequently over the next 6 days. At the conclusion of chemo, his cell production which is currently taking place in his spleen and liver will be wiped out and his immune system will be non-existent. Transplant will be on 10/01. This time frame will be critical because he will have no immune system until his body starts to create new cells. Any infection/disease/etc. could potentially be life threatening. As we understand it, grafting of the transplant cells will take place in the same spleen and liver areas where his current cell production takes place. Typically it takes nearly 4 weeks to get a good sense of how well engrafting is taking place, but they believe with his. His hemoglobin levels continue to drop (they did in the hospital as well) and after yesterday’s tests, he received a transfusion in order to boost his hemoglobin and platelet count. It’s
amazing what a difference you see in him after getting blood. Color, energy, etc. was situation (perfect cord blood match, high donor stem cell count, age, etc) they should be able to see indications within 10-14 days.clearly evident this morning.The secondary engrafting location is a big difference between treatment for this disease and stem cell transplant for other blood/marrow transplants where the bones have the space for the transplant to engraft in their “normal location”. Essentially, Mason now has a large spleen and liver which will shrink as his cell production is completely wiped out during chemotherapy. Transplant will occur and as engrafting takes place and cell production begins his spleen and liver will grow larger again. As he begins to establish new cell production, new properly functioning osteoclasts will begin to be produced. These new osteoclasts will then begin to breakdown bone and over time create space within his bones. As new space is created within his bones, his cell production will begin to “migrate/move/relocate” to the new spaces. Once cell production is established in his bones, his liver and spleen will again shrink back down. The successful transplant treats and corrects what is wrong in
his body; however, what cannot be treated or stopped is the competing bone creation etc. that the osteoblasts do within his body. Once the transplant has taken and his new osteoclasts go to work it will essentially be a waiting game to see if the osteoclasts can work on the bones and obtain equilibrium of sorts before his bone production progresses in a way that
affects his sight/hearing/etc. If the schedule stays as is, we will head to DuPont on 9/21. We will have a room at the Ronald McDonald House located right on the DuPont campus during the first few weeks he is in the hospital and then at some point switch 2-3 days off and on between the two of us at the hospital and at home with Reilly. If all goes well and there are no complications, the doctors said we may be able to go home after 45-50 days. There will of course be a lot more to overcome after that, but we would not need to be inpatient after that. We would need to continue to make trips to DuPont etc. but we would be able to be at home. A big target to get by without complications is the 100 day mark. If Mason can get through 100 days without any major complications and good cell engraftment, he will be well on his way to a high probability of a good outcome.
We hope this fills in some of the details that may have been missing. Please keep Mason in your thoughts. We are very appreciative of the support everyone has given us over the past few weeks. We could not get through this without our family and friends. For that, we thank you.
October 6, 2009: Things have been going really well. He received his transplant on Thursday Oct. 1 and everything went as expected. The procedure wasn’t very different than anything he had done to him already, but it was very different emotionally. Doctors are very pleased with everything thus far. The days since the transplant have been very good. As expected he has shown some signs of being pretty uncomfortable as the 10
days of high dose chemo catch up with him. Chemo for this is different than chemo for cancer. It’s high dose over a short period of time to completely wipe out everything. Mason had a lot thrown at him in such a short period of time. He’s been a champ though. It’s amazing what a little child can deal with. The only real discomfort he shows is in his mouth. He’s temporarily off the stage 2 solid foods because they caused too much mouth pain. He still takes his bottle, but it is in small quantities given in a more frequent time frame. He is on a trifecta of medicines to keep him comfortable. We think we have the right mix of the 3 because he is able to remain very calm for large chunks of time. He plays with his toys, laughs, and flirts with the ladies…..he is accumulating quite a few girlfriends. It really is amazing to see how well he has responded to the treatment. Even though he shows the effects of the chemo, the changes to his body have relieved him of so much more discomfort than any of us probably realize. He is responding to physical and occupational therapy.
He has more mobility in his torso and hips. In all, he is the happy little boy we knew was inside of him all along. He just has to tackle this teeny tiny little hurdle of cell engraftment and the results we need to see from the new cells to fix his disease. Sarah and I are doing pretty well. Pretty draining, but we wouldn’t be anywhere else. We did have to deal with two bumps in the road that Mason had to endure. Thursday morning, the day of transplant, he had a pin-hole leak in his central line which needed to be repaired by an IV nurse. Not the worst thing in the world, but we could have done without it on the day of transplant. It delayed things a little bit, but all was fixed. Then today, Tuesday afternoon, his line snapped off and then broke off when they tried to clamp it. The 2nd break was right next to the entry site on his body so it couldn’t be repaired. The issue with each of the line failures is directly related to the extremely small size of the line and the quantity of different drugs, etc. they administer through the line. We were told when the 1st put the line in that
we could expect to have the line fixed/replace due to the small lumen size. To fix this second failure, Mason had to go back into surgery today to have the old line removed and a new PICC line put in through the same site. Unfortunately this increases his risk for infection. It has been fixed and we’ll move on. He was great through everything. It was unfortunate to have to put him through another procedure though. He was great coming out of sedation though and once it wore off he was right back to being the smiling playful boy he has become.
October 27, 2009: Mason has continued to progress extremely well. As of this morning, his white blood count is up to 1.8 and his absolute neutrophil
count (ANC) is 954. Neutrophils are the WBC’s that fight against infection. His levels have continued to rise consistently over the past week to a week and a half. With these higher counts comes a moderate reduction in the risk of infection. While his risk is still considerably more significant than a completely healthy little boy, it is leaps and bounds better than he was when his immune system was wiped out. If he continues along this path, which the doctors expect, he should be at suitable levels within the next two weeks. Over the past few days Mason has begun to eat again. He remains on IV nutrition, but the amounts are being cycled down in order to stimulate his need to resume normal eating. He began taking small amounts of formula late last week and has now begun to eat stage two solids over the past two days. He almost had a normal dinner last evening……peas, sweet potatoes, and formula. Woo Hooo!!! It is good to see him eat because another one of the criteria to get us home is his ability to eat.
One of the struggles we still have is his ability to maintain red blood cells and platelet counts. This is completely normal because these cells are the last to be produced in the string of new cell production. He continues to get transfused with one or the other just about every other day. Yesterday was a good day. He didn’t have to get either, but today he will need platelets again. These are a few of the other criteria we will need to meet before we can go home. It’s not that we will be finished with RBC and platelet transfusion, but he will need to be able to maintain counts for a longer period of time so that we aren’t going back and forth to the hematology clinic every other day for treatment.
All in all, we could not ask for a better prognosis at this stage of the game. The doctors and nurses have been fabulous and can’t believe how well he is doing. Since there were only 2 other recent transplant patients on the unit, we even got to go for a stroll outside of the room
over the weekend (still within the confines of the blood and bone marrow transplant unit, but hey it was like going on a vacation for the kid). Mason continues to charm all of the people he comes in touch with. When the time comes to leave the transplant unit, hopefully in two weeks or so if all continues to go well, I truly know that all of the people who have loved and cared for Mason will miss him and his contagious smile……as we will miss all of those who cared for him as well.Check a couple of more items off the list of things for Mason to overcome. He’s already getting prepared to tackle the next thing in the long line of hurdles presented to him. He couldn’t do it without the overwhelming amount of support and positive energy he continues to receive from all of our caring and generous family members and friends. Thank you so much for all everybody has done and given to support us through this ordeal.
November 4, 2009: Mason is currently scheduled to come home on Monday November 9th. We are extremely excited and cannot wait to be together
again as a family. Monday will be day 50 since he was admitted to begin his pre-transplant chemotherapy. It is difficult to explain, but it has been a long road since then and at the same time it has seemed to go by so quickly.
Coming home is a big step; however, we will still be making routine trips to A.I Dupont for blood monitoring, tests, shots, etc. In the beginning, we will still need to make the trip every Mon, Wed, and Fri to the hematology/oncology clinic for his blood monitoring and necessary blood product transfusion. Over time, the frequency of these visits will be reduced as his ability to maintain red blood cell (RBC) and platelet counts improve. Once home, we will be looking to continue the great progress we have seen to date and work at getting past the 100 day mark without any new complications, infections, graft vs. host issues, etc. Getting past that 100 day hurdle is a large step for such small little feet.
We also had more wonderful news this morning. Mason’s white cell count (WBC) was up to 7.0 and his absolute neutrophil count (ANC) was up to 5670. These are fantastic numbers and both are significant jumps from the already remarkable numbers we saw on Tuesday. Of even greater amazement was the fact that his hemoglobin level went up on its own for the first time. The only time he had seen any increase in hemoglobin levels prior to today was when he received his RBC transfusions.
left side of this chest since Sept 8th and then had repaired and then replaced in early October. He will receive any necessary blood transfusions and other IV needs through his new port. Over the past few days, he has had his IV medications moved over to oral medications in preparation for his discharge. The sheer number of doses he will continue to receive will be a challenge, but we are working on the timing and mixtures of medicines/foods/etc. so that we can get the necessary medications into him and more importantly keep them in him. While at home, we will also need to give him shots that will continue to stimulate cell production. We never had to give somebody a shot, so we’ll see how that goes come next week.
We know we say it every week when we give an update, but thank you again for all of the support, positive energy, prayers, etc. you have sent our family’s way over the past 2+ months. It is impossible to properly thank all of you or express just how appreciative we are for all of the things our family and friends have done.