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.

Make it or break it

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…