Following Maggie’s adenovirus infection, we started tapering her off cyclosporine a bit earlier than the usual schedule. So, yesterday, I’m happy to report, was the last (scheduled) dose!
For anyone following my 5-hurdles of transplant, getting off of cyclosporine is the first step in the fifth and final hurdle.
Several people have asked when we will start to think of her as having a normal immune system again, so I asked one of her doctors this question and he said that barring major complications, this would probably occur sometime around mid March. At which point she would be able to go outside without a mask and also socialize with other people again.
What is cyclosporine? It’s a very strange drug in lots of ways. (It causes he entire body to grow monkey hair, for example.) The most important feature of cyclosporine for us is that it suppresses the part of the immune system that might attack the parts of Maggie that we want to keep around! We’ve been giving her the drug to keep the immune system at bay while it learns to think of Maggie cells as okay to hang out un-hassled. Now with the cyclosporine out of the picture, that immune system is free to interact with all the Maggie cells in its full glory and we are waiting for the next month or so so see what if anything will happen.
Even though it was raining, Maggie really wanted to go outside today and walk up and down the brick staircase. We also went for a wagon ride. I interpret her interest in getting outside as a good sign of health.
Kaya and Laney both really wanted to get dressed up for this party and I think they look pretty sharp.
I had the chance to visit Lynn, Edward, and Audrey recently. Here we are playing a wonderful and terrible game called Just Dance that I dread, and also highly recommend.
January felt like a bit of a slog – nothing really going on, but somehow the days have just disappeared without many accomplishments. Maggie had a brief hospital stay for fevers/adenovirus but seems better now, although still not gaining weight and less mobile than I would like. Kaya lost one of her front teeth and is rocking 1st grade. And Laney has decided she prefers crazy dance parties at school to ballet class and has announced she will go back to ballet when she is 6. I am excited but nervous for February – feels like a make it or break it month: Will Maggie successfully get off cyclosporine without GVHD? Will she finally start gaining some weight? Will I actually get my grant submitted? Will I manage to sound somewhat intelligent for my talk on Feb 16? Can I convince Laney to go back to ballet (okay this one doesn’t matter)? Will Kaya lose the other front tooth (okay that one doesn’t matter either)? Wish us luck…
In case your ears haven’t been burned off recently by the new smash hit kids song “Baby Shark”, now is your chance. Yes, this video has 2+ Billion views, but only half of those have been done by us. Here is Maggie teaching the dance moves to ever-patient Dr. Prasad.
So, Laney loves cooking. She routinely helps me make Mommy’s coffee in the morning (which is very labor intensive the way we do it.) And here she is cooking fajitas. The pan is scalding hot, but Laney is fearless, even when occasionally singed: a sous-chef’s right of passage. I was derided for this hairdo that I still think looks fantastic.