The Unknown: An Update on Transplant

Hi guys. It’s been a minute & I wanted to update you guys (likely mostly just Grandma).

I’m at a point in my disease where we have ran out of the options that have been carefully studied and administered. In November, I broke through with a terrible infection for the 3rd time in six months. We decided that the medicine I came to NIH for, Ruxolitinib, was not working anymore. And so we put together a transplant timeline and as a Hail Mary, my doctor put me on a drug that is similar to the Rux but has been mostly untested in STAT1 patients. 

Since starting the drug and IVIG therapy in December I’ve had viruses, fevers, swollen joints, minor oral thrush & mouth ulcers and nearly constant nausea. But I have avoided an acute hospital admission. We are buying time with this plan, trying to hold off on transplant, which I have begged to push back 3 times now. If things get worse, we could be looking at September. 

But although I am in a lot of pain, it still does not compare to how the bone marrow transplant will obliterate me, likely keeping me from my normal life for a year or two, depending on complications. And so I remain indecisive, and I treat the symptoms but not the underlying cause, and I hope and pray I can stick this out as long as possible.

I am fighting so hard. And I will not stop.

These ding dongs need me ♥️