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.

Nearing the End of the Beginning (D+90)

"There will come a time when you believe everything is finished. Yet that will be the beginning." - Louis L'Amour

Wow time is flying by. It's day 90 after transplant and all seems to be going very well. We've been told that if everything remains stable then Elise will be released to return home early next week which is a few days early! We're all real excited at the prospect of getting home.

There isn't much medically to report. They've tweaked some medication dosages based on the weekly tests she has, but everything seems to be going as the medical team would anticipate. Elise did start having the sniffles and a dry cough just about the same time as the D68 entrovirus hit the news, so they ran some tests and decided she just had a normal head cold. She's still a bit congested and coughing a little, but it only seemed to slow her down for a day.

One thing you might notice in the picture is that Elise started to lose her eyebrows. Chemo and radiation affect the fastest growing cells first. I guess the eyebrows grow more slowly. She hasn't completely lost them, but they are definitely much thinner. But they'll grow back just like her hair. The hair on her scalp is now light colored and about 1/4+ inch long. She's finally able to kid me about being bald without me being able to turn it around. I do still rub her head "for luck".

We've made arrangements with Children's Hospital LA for follow-on transplant care once we get home. Elise will need to see a transplant Dr weekly for a while and then it will scale back until we hit the magic 1 year mark. At 6 and 12 mo she'll need to come back to NIH for short visits. After that it's once per year until she hits the 5 year mark.

We're trying to make all the arrangements required to move out of our apartment. Most things are easy, but getting rid of the furniture has turned out to be more of a headache than I'd anticipated. Who knew that it would be so hard to get furniture picked up? But we couldn't expect everything to go smoothly.

Elise has been visiting with the teacher daily. They've been trying to get a little ahead on the math coursework so that she starts back to school even with her classmates. I'm not sure all the other classes will go as well (she hasn't been practicing the flute much at all), but then we asked them to concentrate on math since its so hard to catch up once you get behind.

Around the edges we've been trying to take in the local sites. We finally made it to the Bureau of Engraving and Printing and we hit an Art Fair in Alexandria last weekend. The weather has gotten really nice. Hopefully it's cooled off in Ridgecrest when we finally get there.

We're considering hosting a Welcome Home for Elise after we return, so if you're interested please keep watch for an announcement.

Time Passes Quickly (D+80)

"Time is a sort of river of passing events, and strong is its current; no sooner is a thing brought to sight than it is swept by and another takes its place, and this too will be swept away." - Marcus Aurelius

I realized I hadn't posted an update for a while. Guess I've been negligent...sorry.

It's already 80 days post transplant! I can hardly believe it. The bottom line is everything is going well. Elise's blood counts are good, but don't look as good as I'd expect, but I'm not the medical team. They assure me everything is going well. So I ask questions and get reassurances. At least it gives us something to talk about. Elise does have a rhinovirus (i.e. headcold) that she probably picked up on our trip, but the Drs have told us not to worry. It's not the EV-D68 virus in the news or influenza (they ran a test today), just a normal head cold that will pass.

Elise is down to once a week tests and visits with the medical team and gradually the list of medications she has to take are reducing as well. They have started tapering her prednisone dose although we don't think it'll get to zero for quite a while since her underlying colitis will take a while to heal (maybe a year). She'll likely be on several of the medications for a full year post transplant, but we'll see.

Today we actually discussed coming home with the team. They have a protocol for the 100-day release and we talked a few more details of what that would encompass. Mostly we talked about timing as we're actually at the point of making some plans. Elise is within 3 weeks of being released to come home. We've contacted Childrens Hospital LA to arrange follow-on care with their BMT team and I signed releases today to send all the medical records to Elise's Dr's at home.

Last week was a fun filled week. It was the anniversary of Becky's 29th birthday so we decided to go to Ocean City, MD for a couple days after her Tuesday medical visits. After Ocean City, we drove to Assateague Island to see the wild ponies (of "Misty of Chincoteague" fame). After that we went on to Williamsburg, VA to visit Colonial Williamsburg (Elise's 8th grade history covers early American history). We started the week with a visit to the White House that I'd arranged earlier.

I don't know how we're going to pack up everything we want to bring home, but I guess we got most of it here in suitcases on an airplane so it's all gotta fit in the Toyota - right? We're going to donate the furniture and housewares we bought to a charity that I contacted today. We also bought a rooftop cargo box for the car. And I've been telling Becky that she has to throw away something every time she buys something. I don't think this latter tactic is working.