Monday, October 14, 2014 – 332 days after chronic myeloid leukemia diagnosis – Pre-Transplant (Part I)
Getting the news about the fact that the Toronto Princess Margaret Hospital neglected to start the Unrelated Bone Marrow Donor Search last week really put a damper on Kevin’s spirits. He was really anxious about finding out if they found a bone marrow match. To top it all off, we get that news on his birthday. His positivity about having the transplant went from an 8 back down to at least a 4! I’ve managed to get him back to about a 6, but that news really made him feel like A) His life is in the hands of people that are either incompetent or just don’t care that much. And B) It is necessary for him to second guess and question everything that his medical team does and says always.
You tell a cancer patient that they are not responding to treatment, their cancer is transitioning to a more aggressive phase because of a known resistance factor (the double Ph Chromosome)… AND THEN you tell that patient that they NEED a stem cell/bone marrow transplant ASAP and you hope to find out if there is a possible bone marrow match within a week and a half. Kinda makes you feel like there is some urgency to the situation, doesn’t it? Even after we discussed the fact that we would rather do the transplant in Ottawa because of the support we have there vs. Toronto, we were told that the Unrelated Donor Search still needs to be commenced ASAP and Toronto would take all the blood for the HLA testing to make that happen, on September 2, 2014, and get it started so it can be transferred to Ottawa.
You know that feeling when your gut tells you that you should do something? Something told me that I SHOULD call Toronto to make sure they actually were proceeding with the Search. I called Ottawa to make sure his referral was sent there ASAP, but I didn’t call Toronto. Why? Well, first of all I didn’t think something that critical would be overlooked or not proceeded with… Duh! Oh and second, I didn’t want to come across as the difficult crazy caregiver second guessing the competence of top specialist’s medical team. Well now I know that I should have went with my gut feeling and I don’t think I will ever second guess it again. They can call me crazy all they want. I hate thinking negative, but it has been really difficult not to throughout this cancer journey.
One thing that really gets my blood boiling about all of this, besides the obvious WTF is going to happen if they can’t find a match in time, is we were told not to encourage our family and friends to get tested because they wouldn’t get on the lists in time. Maybe there would have been time and maybe there would have been a WILLING match close to home… since that was over a month ago!
So anyway, I’m not going to rant about this “discrepancy” (*cough!*cough! malpractice) any longer, unless it (heaven forbid) becomes a serious factor in Kevin’s prognosis. It’s unfortunate that it happened and it’s unfortunate that Kevin’s mental health has been affected by it, but we will keep on keeping on hoping for and focusing on the best and bracing ourselves for the worst!
We did get some calls last Friday to schedule some preliminary transplant testing, so things are moving along and we are grateful that we can do most of the testing right here in Kingston. We also enjoyed a lovely Thanksgiving weekend with family and friends. So that was awesome too! =)
Thanks so much for stopping by!