Stop, drop, and rest

Maggie has gotten a lot of her stamina back, but she doesn’t have the endless energy typical of a 2 year old. She will play, play, play, and then all of a sudden, get tired. And it doesn’t matter where she is or how uncomfortable the surface, sometimes she just needs to take a rest.

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MPS 5k!

We had a great time this weekend at the MPS 5k. (MPS is the disease Maggie has). Kaya won her division (12 and under). Also, Tracy scores some sweet purple capes that made this race very fun. Loved the capes.

MPS Pizza Night

We got together with another family that has a child with MPS family, including all the kids, for a pizza bash. Being able to go out like this is one of the new features of being semi-off cyclosporine. It was great to both get out, and also get to meet some new people dealing with some of the same issues.

Genitourinary Cancers Symposium

I’m both humbled by and proud of Tracy, who, between diaper changes and hospital runs, somehow found the time and energy to fly to San Francisco and deliver an abstract summary discussion for an audience of about 5k people. I reviewed the slide deck and won’t embarrass myself here by trying to relate any of it, so I’ll just summarize it by saying that the phrase “renal cell carcinoma” was commonly used. Congrats Tracy, and welcome home. I miss you terribly when you’re gone for even a few days.

No more cyclosporine!

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.