I want to start by thanking everyone for your continued support! We have almost hit 20% of our overall goal which is allowing us to be here 24/7 with Kai through his tough journey! It means the world to us as we consider it our duty to Kai to make every moment something special and fun so he has every reason to hold on and fight for his right to live a long and full life.
Kai is 3 months old today and we have some great news to celebrate, we have found an identical match for Kai's bone marrow donor!!! They have 10 DNA points that they compare when looking for a bone marrow match and his donor matches all 10. That gives him the best chance at success!
Unfortunately, despite treatment Kai's viral load from CMV has remained the same. In a sense this is good because it hasn't risen, but we would really like to see it fall significantly before transplant to minimize the possibility of complications. On the good side he's not experienced any symptoms so we are very hopeful that it will continue to just be a number on paper rather than causing any actual problems.
The immune system includes T cells, B cells, and NK cells. Kai has no functional T cells or B cells but his NK cells are still functional so they pose a risk unless they are killed off first with chemotherapy. Now that we have a donor lined up they are aiming to begin the "conditioning" phase by the last week of august. If all goes well that will consist of 11 days of chemotherapy to make sure Kai's immune system is killed off completely so that it won't attack the donated marrow cells. If he has too much of his immune system intact it will reject the donor marrow causing what is known as "Graft vs. Host Disease".
The conditioning phase will be followed immediately by his bone marrow transplant. The transplant itself is basically just a blood infusion. The marrow cells will migrate to the bone and take root there. At this point he will be the most vulnerable to infections and other complications while we are waiting for the new cells to take root within his bones and begin growing his new immune system. For about 100 days following transplant Kai will be watched very carefully to assure that any problems or complications are caught and treated immediately.
We are very excited to be getting the process started as obviously we are anxious to finish the process and return home with our healthy baby boy. At the same time we are nervous because we know this is where things get tough for Kai. Obviously no one wants to see their little one have to deal with chemotherapy. We're really hoping it won't be as bad as our imaginations can sometimes make it out to be. Luckily we have met several other families with children who have successfully beat SCID, often with some complications and yet today they are at home and doing well. That helps us to keep focused on a happy, healthy future for Kai.
Please keep Kai in your thoughts and prayers as we move through this difficult journey. We are forever grateful for all of the ongoing love and support you all continue to share!!!
If you would like to send anything to Kai (No flowers or Latex Balloons are allowed in his unit) we can receive mail at the following address:
Kaimani Knight, Floor 10 south, Room 7
Doernbecher Children's Hospital
3550 SW US Veterans Hospital Rd.
Portland, OR 97239
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