We had the bone marrow consultation for Sawyer on Friday. Incredibly hard and sad information to hear. Not something a parent ever wants to sit through. Since you are all on this journey with us I will share the facts.
HLH bone marrow transplant is the most risky type of bone marrow transplant.
3 options for transplant:
A- been used for 30 years. 70% survival rate.
B- a research method with 80% survival rate and less side effects.
C- a very new research method from Europe. Only 100 cases with 90% survival. Never been done on a kid his age. One of the few that have died, died because they had HLH in the brain. Sawyer has HLH in his brain.
Clearly there is more to each one but that's the basics.
10% of transplants don't take.
Almost certain he will be infertile. I asked, "like a 90% chance" and she said very highly likely he will be infertile. She wouldn't give me a percentage.
Long term side effects could be slight growth delay, have a slightly lower IQ, cancer, and thyroid issues.
Main side effects are liver and lung failure, 30-50% chance of having GVHD, insulin not working properly, heart issues, sores along GI tract, and rashes on his body.
It will be months possibly a year before he can eat using his mouth again.
A year before his immune system works properly.
We will be in patient for a minimum of 4-6 weeks. Since he is young she wouldn't be surprised if it was longer. Minimum of 4 months in the Seattle area being an out patient. Again it is a minimum and could easily be longer.
She said he will need one parent to be a full time caregiver for him. "This is a full time job and we need someone dedicated to him full time". She continuously stressed how hard and taxing this will be.
We still do not have a date for the transplant.
On the bright side, we got to go home today!
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