Big Decision

As weve come to the end of the week, we have been asked to make a big decision by SCCA(Seattle Cancer Care Alliance). Yesterday afternoon, I spoke with a Dr. Paul O'Donnell at SCCA and we had quite a difficult conversation about where my HLA tissue typing was at with regards to my brother and any potential unrelated donor. He very straightforwardly, and in my opinion very rudely mentioned over the phone that there was "no" chance of finding an unrelated donor for me, and that my brother was also not a good enough match for transplant. The afternoon before they hadnt even begun a tissue typing search, so this news was very upsetting and startling to say the least.

As the conversation progressed I came to find out that he was under the impression from a July 16th consult at their facility that I was in "Blast crisis". I realized at that point that I needed to have my physician speak with him to straighten out this misconception because I am in fact not in blast crisis. I also came to find out from this conversation yesterday for the first time, that they had already slated me for a transplant time slot beginning on August 21st (registered into their system), pre-conditioning on a special antibody (mid-september) and transplant on October 1st. They also have wanted me to specifically be involved in a HAPLO transplant which involves a family member that is not a full match. Without speaking to us at all, they had done all this in preparation for a transplant for me.

I have had the gut feeling all along that they would try to get me into this particular antibody regimen for this type of transplant and have had a very leery feeling about all of it. Well, through what I consider to be a massive set of coincidences, I just happen to fit all of their criteria to get to this particular type of transplant because my brother is supposedly not a match and they informed me that there is no chance of finding an unrelated donor. Phhewwwwww....okay

After speaking with my doctor yesterday afternoon, some things were straightened out about my current health status which is much better than they had thought. However, they put us in a position yesterday where we had to decide by today if I want to be entered into their system for this particular procedure which would all get started on August 21st commencing with a transplant on October 1st. They told us that they had reserved this antibody for me, but that someone else needs it if I decided not to start the process at this time.

As you can tell from my writing, I have been skeptical about most of this for awhile but from what they have told us I must decide to do this now or wait until November when the next antibody regimen of this type is processed. Apparently they can only produce so much at a time.

We still dont know if my parents or my sister Elizabeth will match my tissue typing (HLA tissue typing), but they will be going down to have their blood drawn next tuesday and their tissue typing will begin. If none of them are a match, there is a strong likelihood that there will be no transplant at all. I would have to rely on my current medicine to work for me, and/or hope that a newer technology or better medicines come along if this one fails also.

My gut instincts for this big decision told me that I dont trust what they have been telling us and I would rather wait especially considering that I have been improving with all my counts on my new medicine, and that someone else may really need this antibody.

After thinking about it over the last 24 hours, and listening to the wisdom of Dr. McGee I decided that it would be in my best interest to not risk anything and to get to that transplant as soon as possible which would be the October 1st date if I say I want this current antibody they have prepared. His points were that there is very little guarantee that my new medicine will be working well enough in 3 months to allow me to be in good enough shape for transplant in November/first part of December. We now need to pray that my father, mother or Elizabeth will be enough of a match to do the procedure.

The procedure is called a HAPLO transplant (mismatched family transplant), and I found lots of great information by just googling HAPLO transplant and searching around. We will probably be meeting with them next week or sometime soon at least to discuss the procedure and all other details including caregiver duties, etc....

On top of all this, today I had to have my blood drawn again to see how I am doing on the new medicine.....Good news, numbers still improving. We had to do an EKG for my heart, because the new medicine Im taking has shown to be an issue in heart irregularities for some patients. Good news........my heart is working great. All my vitals have been great over the last year and a half through all this with my blood pressure, oxygen levels, pulse, lung functioning, etc....Lastly, I had to do a bone marrow aspiration today so that we can continue to monitor where this recent acceleration of Leukemic cells is at. If the numbers are going down, that will be more good news but we wont know until the middle of next week about my marrow.

I really have run out of thoughts for now. Mom is home and its time to eat some fish n chips!! I love you all, and will continue to update whenever possible.

Tyler