6/15/19 Tapering

What an appointment we had last week!
Reese’s doctors are spacing her appointments to every THREE weeks, starting now. This is based on her IGG levels holding even better, so we can space her IVIG. I explained last week that there are two reasons Reese needs these infusions so often… so perhaps her B cells are coming back AND she is holding onto it better, both wins!
We started tapering her final immunosuppressant on Wednesday. Jakafi goes to 1/2 dose for a few weeks and then OFF. Jakafi entered the picture last fall, the first time that Reese presented with post bone marrow transplant TMA (thrombotic microangiopathy). This was the trifecta of transplant related complications that Reese had to contend with over the year. The doctors had a theory that her TMA was a result of tacrolimus, one of the immunosuppressants that is pretty common after transplant. To get her off tacro, quickly, Jakafi was introduced. This was a BIG deal, because Jakafi is a new-ish drug (not even FDA approved for Reese’s case) and it only comes in pill form. This was at a precarious time when we didn’t know if Reese’s gut was actually absorbing… anything. Well, we quickly removed tacro, added Jakafi, and everything seemed to be fine. Her TMA symptoms seemed to resolve (only to resurface again later, but that’s a different subject.) She didn’t suffer any repercussions from removing tacro, so we said that the Jakafi worked. The Jakafi remained in place since then… and from what I can understand, the reason that it remained as long as it did is because there were too many other big players to taper before the doctors wanted to spend time tapering Jakafi, as it has the least terrible side effects. (That we know of, like many of the meds that Reese has been on, it has not been tested in children.) So according to this plan, in about five weeks, the only immunosuppressant Reese will remain on is Vedolizumab (infusions every six-weeks.) The word “vaccinations” was thrown out, as an idea that could be a possibility in her near-ish future, and the magnitude of that was not lost on me. I know that Reese is at risk, and this is on my mind with each activity I sign her up with (measles, measles, measles..) I know that she needs to be off all immunosuppressants for a time period to be considered for vaccinations, because if her own immune system isn’t fully reconstituted, the vaccinations just won’t work. I’ll talk more about this when it happens, I find it really fascinating and I’m still learning. Finally, the doctors mentioned a goal. The most incredible goal, to have Reese off all of her transplant meds by the END OF THE SUMMER! My God, this would be a miracle, a dream come true, as my little girl enters kindergarten. I think back to Father Dan’s prayer, asking God for total and complete healing. My family is so thankful and so blessed.
Today I went to Body and Soul to buy new ballet gear with Reese and Quinn. Because they start ballet again on Monday, together. I felt my heart grow even more grateful, as I watched her twirl around the store. Life is Good.

Leave a Reply

Your email address will not be published. Required fields are marked *