I love this picture that Laney made for valentines day. We have it up on the fridge and I look at it every day. She’s so genuinely happy it’s wonderful 🙂

Come join Team Magnolia for the Raleigh Run for Rare MPS 5K on March 30, 2019. We would love the community to join us! What else do you have to do then come to Raleigh at 8am on a Saturday?

https://support.mpssocietygive.org/event/raleigh-run-for-rare-mps-5k-2019/e218711

It feels like it has been raining incessantly here for the last several weeks, which is really hard on Maggie because it means she just has to stay inside the house all the time. She is now off immunosuppression, but it is still flu season and her immune system is not normal, so she is not yet able to fully join society. Laney and Maggie and I did sneak out to Duke Gardens a few weeks ago during better weather, but we are oh-so-ready for a sunnier springtime.

Laney loves this tree and has been discussing the status of the flower buds with me every day this week. Here she is enjoying it 🙂

Maggie enjoys her first “Caramel Delite”

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.

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.

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.