So Long, Farewell, Auf wiedersehen, Goodbye (D+95)

The "Day 100" Blood Draw

“Nothing behind me, everything ahead of me, as is ever so on the road.” - Jack Kerouac, On the Road

Elise had her "last" visit and tests at NIH yesterday and she's been released to leave the local area. We're packing up today and hope to hit the road tomorrow for the long drive back to Ridgecrest. We plan to stop several places along the way and visit family and friends.

Of course there are some lingering things that will bear watching in the coming months. Elise will have weekly visits with the transplant Drs at Childrens Hospital LA who will be our "local" transplant team. They will be closely monitoring the recovery of her immune system. And we'll return to NIH for short visits at 6, 12 and 24 month post-transplant. I'm a bit nervous because her blood test results look "odd" to me, but the medical team tried real hard yesterday to make me comfortable that "it's all normal". Her WBC counts were a little low so they gave her a GCSF injection and gave us some doses to take along with us "just in case".

We had the "release" training and it made Elise upset. Since she'll continue to take Sirolimus for many months to help prevent GVHD, her immune system will continue to be somewhat suppressed. As a result she has to continue to be careful about many things. For starters she is more susceptible to viral infections, which she never was before with CGD. The one that she wasn't prepared for was "no contact with farmyard animals including horses". She had plans to start horseback riding when she got home. This is a long running dream of hers: once when she was little she asked me if I could "call up the workers" so that they could come build a stable in our back yard. In any case, all these precautions will go away some time in the next 9 mo when she stops taking Sirolimus.

We've had many talks about the return to school and I'm not sure how this is going to go. She doesn't want to be singled out in any way (good or bad), but we've tried to tell her that people will be naturally curious about what's up. After all she's lost her hair, eyebrows, and quite a bit of weight. And without a doubt there will be someone who will say something inappropriate (she's in middle school - not exactly the bastion of carefully considered comments).  We've tried to convince her that the best approach is to hit it head on (e.g. "I had a bone marrow transplant, but I'm well now and my hair will grow back"), but she just wants to be a normal kid. She's tough though and I'm sure she'll get through it.

So, assuming the movers show up today and NIH doesn't call us with a "we have some bad news" call, we'll hit the road in the morning and be back in Ridgecrest around 1 Oct after seeing many parts of the US we've never visited.

A few members of Elise's medical team at her release visit.