Will had an appointment today and it was not good.
Medically, he is relatively stable given his genetic condition which is a HUGE blessing. He is much healthier than Kate was at his age and his counts are holding on their own which is nothing short of a miracle.
However, we are facing some extremely hard news related to finding a donor.
I blogged about Will's original donor backing out and since then we have had one lead on a potential International donor. Unfortunately that donor has not responded to any form of communication. We will continue to pursue the donor (via the NMDP) but, as each day passes, he is looking less and less like a viable candidate.
Will's doctors have removed him from the transplant schedule which means we currently have no admit date, no chemo start date, and no transplant date. Nothing can be started until we have a donor.
The doctors and coordinators are circling back with the registry to see if there are any other possibilities but, given the fact that the registry is checked daily, the chance of someone popping up is very slim.
So where does that leave us?
We have four options - all of which require waiting - which is something I am NOT good at.
1) We wait to hear from the International donor, he agrees to donate, and we move forward with the transplant process (best case scenario).
2) We wait for Will's body to fail him. When then happens, we would immediately proceed forward with option 4 and pray we can make it to transplant in time.
3) We wait for someone that matches Will to join the registry before Will's body fails him.
4) We wait until Will is closer to two and move forward with a risky type of bone marrow transplant called a haplo transplant. A haplo transplant is when a non-matching parent (it would be Alex as I cannot donate due to a blood condition I have) donates marrow to their child. A parent is used since they make up 50% of the recipients genetic makeup. This option is not nearly as successful (success rates are cut by at least 50%) and involves total body irradiation (TBI) as well as intensive chemotherapy during the condition phase of transplant. Immunosuppression and post transplant medication/ treatment is also much different/ harder as the risk of graft verses host disease is very high since the donor is not a match. TBI is not recommended for children under the age of two which is why we will wait as long as possible before exposing Will to radiation.
This has been a hard blow to take. We had everything perfectly planned. We had a donor. We had care lined up for Kate. I was terrified but at peace regarding Will's transplant.
I knew there would be challenges with Will's transplant. But I never in a million years thought finding a donor would be one of those challenges. I never, ever thought I would hear things like "experimental, risky transplant" or be searching for haplo centers of excellence while seriously considering transplant somewhere other than here in Houston.
My mind is filled with morbid thoughts about how we approach this next year of waiting. Do we drop everything and live life to the absolute fullest? Take Will back to Disney World? Let him experience the beautiful beaches of Hawaii? Cram every possible family experience into one year since we may only have a 30-40% chance of Will making it to his third birthday?
Or do we just live our normal, every day life? Enjoy the mundane?
I hate that I even have to think about things like this.
I hate that this is the hand Will has been dealt.
I hate that the blows just keep on coming.
