Day 0, Transplant Day

 

After a week of conditioning, Kurt received his stem cell transplant today at 2:28pm EST. Days -8 through -1 included: 11 total body radiation treatments, chemo, and three treatments of Thymoglobulin. Kurt had to deal with fatigue, nausea, fever, rash, and rigors (shaking). Today, a little over 9 months after his initial diagnosis, he received the gift of stem cells and the hope of a future without Leukemia. 

In the Leukemia world, Day 0 is transplant day, a second birthday, a re-birthday if you will. After some pre-meds (that made Kurt pretty drowsy), the transplant team brought up the frozen stem cells. This beautiful gift from a stranger in Europe arrived in Lexington, bringing hope and new life. We are so incredibly thankful for Kurt's donor and his sacrifice of time, comfort, and stem cells to save Kurt's life. 

Kurt received 4 syringes full of stem cells through the tri-fusion catheter in his chest. The oncologist infused them each slowly over a 30 minute period. During that time, Kurt was asked to eat hard candy, as preservative to protect the stem cells can cause a terrible taste in the mouth and tickling in the throat. He appropriately chose "LifeSavers" candy. 

And now, we wait for those cells to enter Kurt's bone marrow, engraft, and to produce cells. Engraftment generally takes 7-14 days. As we wait for them to begin to work, Kurt's own marrow and cells are dying or already destroyed. His counts will be non-existent. He will require blood transfusions, prophylactic medications to prevent infection, and careful observation. Kurt has also already began immunosuppressant medications that will keep the donor cells from attacking his body. We hope he will have Graft vs. Leukemia effect where the donor cells kill off any cancer cells they encounter, but we pray he does not have Graft vs. Host Disease (GVHD) where the donor cells attack his body. They thymoglobulin treatments he had pre-transplant will also help in preventing GVHD. 

Over the next two weeks, as we wait for the cells to engraft and begin to work, we pray that Kurt will be protected from infection, GVHD, and mucosistis (mouth sores/sores in the GI tract). We pray that his body will fully accept these new cells and that they will work beautifully for many years to come! 

Today, Kurt completed another part of the marathon that his fighting ALL. We come now to the longest part of his journey--the post-transplant healing. We have been told to expect a rough time for the next two weeks. We know we serve an awesome God who can take away these nasty side effects! We also know that if this prayer isn't answered the way we want, He will walk with us through the hard days. 

Thank you for coming along side us and praying. That you for all the messages and encouragement today and on many other days. Thank you for praying for and supporting our children. We love each of you!  

And the count down begins...

 

Last week was a busy one for Kurt! On Tuesday, we met with the radiation team and discussed the radiation treatments Kurt will have as a part of transplant. Kurt also went through the process of mapping, so the radiologists will know exactly where to "shoot" him. He was pretty disappointed to learn that he won't become the Hulk or gain other super powers. If you ask me, he's already proven he's Superman! 

Kurt will have a total of 11 total body irradiation treatments during transplant. The radiation serves two purposes: it will kill any leukemia cells that might be hiding out and it will kill off Kurt's own immune system, so that there is room for the new donor cells to engraft. 

On Tuesday afternoon, we met with Kurt's oncologist. We learned that the most recent biopsy shows that he is still MRD -! We are so thankful that the Blincyto worked so well for him. The spinal fluid they tested was also negative for leukemia! Kurt was cleared for transplant and signed all the consent forms. His donor donated stem cells last Tuesday and Wednesday. We learned, based on paperwork Kurt signed, that his donor is from Europe. We know he is likely a young male, but we aren't allowed to know any further information. We are so very thankful for him and hope to be able to thank him one day! 

Kurt's doctor also went over the plan for transplant with us. Kurt will be admitted on May 10th to begin the process. Here is the timeline she gave us: 

May 10th: Admit to UK (fluids, prep) Day -8 

May 11th: TBI (Total Body Irradiation) 3 Sessions Day -7 

May 12th: TBI 3 sessions Day -6

May 13th: TBI 3 sessions Day -5

May 14th: TBI 2 sessions Day -4

May 15th: Etoposide (Chemo) and Thymoglobulin Day -3

May 16th: Thymoglobulin, begin immunosuppressants Sirolimus and Tacrolimus Day -2

May 17th: Thymoglobulin Day -1

May 18th: Stem Cells Day 0 

After Kurt receives his stem cells, we begin to count up (Day +1, Day +2). We expect Kurt's new cells to engraft (begin to work) around day +7 to +14. Kurt will have a 4-6 week hospital stay and then daily clinic visits for several weeks. During the first 100 days, he is particularly susceptible to illness. When he reaches day 90-100, he will have his first biopsy and begin reducing the immunosuppressants. Hopefully, he will be able to be COVID vaccinated at 2-3 months post transplant. 

On Thursday, Kurt had his tri-fusion catheter placed. This is a relatively short procedure but took all day, as he got bumped back for an emergency. Unlike the PICC line that Kurt has had so far, the tri-fusion is in his chest and has three lumens instead of two. It should be much easier to use and take care of. Best of all, it should also have a lower infection risk. We are so thankful that Kurt never had an infection with the PICC lines during his treatment. Kurt was pretty sore for the first 24 hours, but is feeling much better now. 

It is hard to pack up and prepare for another lengthy hospital stay. We are so thankful for all the help we have had with our children and for all the prayers and encouragement we have received. We are both nervous about transplant but take courage in knowing we are safe in God's hands. 

As we head into transplant would you please join us in praying: 

-For Kurt to tolerate each new treatment well with minimal side effects. We specifically pray that he will NOT have mucositis (painful mouth sores/sores lining the digestive tract). This is a particularly painful side effect, prominent during transplants, often leading to weight loss and the need for a pain pump/feeding tube. God has protected Kurt from mouth sores so far and we pray that He will continue to do so! 

-For Kurt to be able to eat and maintain his weight during transplant 

-For Kurt's donor cells to engraft and work perfectly 

-For any remaining leukemia we can't see to be obliterated 

-For minimal Graft-vs-Host Disease (we want graft vs leukemia but we don't want the donor cells to attack Kurt's body) 

-For Kurt's organs to be protected during all of these treatments, particularly for his lungs, kidneys, liver, and GI tract to have no infections or complications 

-For Kurt to be protected from germs and the reactivation of dormant viruses like Epstein Barr or CMV

-For Kurt's heart to be encouraged and for God to give him peace and comfort daily 

-For our children at home to be comforted and have peace with mom and dad away for so long. We pray they will be protected from illness or injury during this time. We pray their hearts will feel God's loving care. 

-For our parents and family members caring for our children 

Thank you for praying with us and for us. If you would like get daily updates during transplant, please contact me for information regarding our Facebook group.