I have been really putting off writing this post. It has been a hard one to sit down and write as it seems we are yet again coming to a crossroads. Sebastian had a fourth donor boost on June 14th as his chimerism results showed his B-Cells are still dropping. They now sit at 55% donor which means his own cells are at almost half. Sebastian's counts are: Myeloid cells - 84%, stable from the last chimerism, T-cells - 93%, down from 97%, and B-cells 55%, down from 61%. When I heard the news it felt quite devastating. I think Nate and I thought the third boost would do the trick and we could wash our hands of this. I had all sorts of thoughts going through my head, the most worrisome, that his bone marrow transplant is failing.
We quickly scheduled a family meeting with our Oncologist to go over results and decide on a plan. Our team reassured us that Bash's transplant is not currently failing. His other blood counts are staying strong and if his cancer were present his white blood cell count would be elevated and his platelets would be low. Both those counts are normal and no cancer cells have been seen. Our team also said that some transplant patients live with a mixed chimerism and that this could be his normal. They did not want to waste any time though as we have enough donor cells available to boost him. He was scheduled two days later on June 14th for his fourth donor boost which was a strait DLI (Donor Lymphocyte Infusion) and 10x the amount of his third boost in hopes again of causing some graft vs host disease which in turn would give us the desired graft vs tumor effect.
Our team did go over what our options will be if this fourth boost doesn't increase his donor cells. We have enough cells still to do at least two more boosts, which we will definitely do if needed. Bash is almost at a year post transplant which is amazing, and a good sign that he has done well so far. The benchmark we want to hit is the two year post transplant though as studies show after two years the chance of relapse is much less - the farther from transplant you get the better the odds. After this next boost we will do his chimerism test (scheduled for July 10th) and his results should be back in one weeks time as they will put a rush on them. If his counts are still dropping Bash will be scheduled for a bone marrow aspirate to check for cancer cells and to get a better chimerism result from the source. Depending on those results we will then be looking at either a second bone marrow transplant from a different/new donor, or we wait and see if his cancer returns, and if so he would need to be treated with chemotherapy again to get his cancer into remission and then a second bone marrow transplant with a different/new donor. Both are extremely risky and neither are options we want to even think about let alone choose.
We found out almost one year ago today that his cancer was in remission. It was such a blessing and the best timing going into everything we faced. It seems crazy to me that it has almost been one year since his bone marrow transplant too. Lots of pictures and videos have been popping up and flooding my facebook and snapchat memories. Seeing videos of him a year ago is mind blowing. He has come so far and is so different, he has so much hair now! His resilience still amazes me. I am still blown away by how strong he is and what a loving, compassionate and gentle little boy he is. He is definitely an old soul and has taught us so many things in his two years.
And I can't believe it's almost the end of June! Sebastian celebrated his second birthday June 4th! A huge milestone for all of us! We did a Vikings and dragon theme, and Icing Smiles Canada and Krista at Simply Sweet YYC are to thank for our amazing dragon cake! We had numerous family and friends come out to celebrate and we could not have asked for a more perfect day! We have spent so much time outdoors enjoying the beautiful weather. Sebastian loves to be outside, wants to go to the park all day and discovered the water park recently as well. We are looking forward to the July long weekend with family in Saskatchewan for Nate's family reunion and some much needed vacation time.
As always, thank you for your continued love, prayers, and well wishes, we would not be where we are today without you all! And the quote that speaks to me the most in this moment, "Always pray to have eyes that see the best, a heart that forgives the worst, a mind that forgets the bad, and a soul that never loses faith."<3 p="">
