Thursday evening we had the pleasure of going to the Cincinnati Zoo with another family staying at the RMH. Abdullah is 3, a few months older than Zachary. He and his mom and uncle came all the way from Pakistan so Abdullah could receive care at Cincinnati Children’s. Yes, the hospital is that good! I am always amazed at the distances that families travel to come to this hospital.
Anyway, the zoo was hosting the Festival of Lights, we had planned on going, and invited Abdullah and his family to come along. Abdullah and Zachary are both a little fixated with trains, so riding the train was high priority. Elephants and snakes were also on the agenda.
Jonathan is obsessed with snakes, has been for awhile. In fact, I told him when he’s 10, he can get a pet snake. That was over a year ago and the obsession lives on. Unfortunately the reptile house was super crowded and we only got to sneak a peek – but it was enough for Jonathan.
Snakes and trains, it’s a wonder what kids latch on to. Which brings us to Jacob. He announced that he would like to visit Abdullah and his family after they go home. (Which should be in a couple weeks, GO! Abdullah!)
So Jacob is planning trips around the world to Pakistan. Of course, Sinoma (Abdullah’s Mom) did welcome us to come visit. I’m sure Jacob will venture around the world someday. Most days it’s difficult for me to think about future plans when I so rarely see the outside of these hospitals walls.
Speaking of, I’m always amazed at the differences between doctors. Last week the BMT attending had a “wait and see” attitude. This week there is a “destroy amd conquer” mentality. Of course, I think the “wait and see” lead to the “destroy and conquer”. 98% of David’s T-cells were activated, which meant in all likelihood, they are donor cells, not his own. So campath was administered on Wednesday.
They’ve gone back to the infliximab and basiliximab twice weekly, along with campath as deemed necessary. The BMT attending announced this morning that we may need to re-evaluate how David is being treated. He’s been on high doses of steroids for almost 4 solid months now and he needs to come off of those.
We’ve been trying to kill off his lymphocytes, but they keep coming back. The BMT attending scrutinized his CT scan from Sunday and sees enlarged lymph nodes in the general area of his liver. She thinks this is why we can’t get the upper-hand on the GVHD, his new liver is still producing unwanted lymphocytes. There is a more potent level of drugs that will destroy eveything, not just the lymphocytes. Total eradication is now on the table.
As always, there is more. The leg PICC that became infected just days after insertion, is infected again. We don’t know yet if it’s the same bug or something different. It may need to be removed and replaced, again. It may account for why he’s suddenly running fevers, again.
At least we’re making some good memories while we’re here.
I wonder where Jacob will want to travel to next.