The Waiting Game

Not much new to report except increased anxiety and some sleepless nights.

We're about 2 weeks out from relocating. Being gone for 4 months is so much different than my standard couple days to a week business trip or vacation. I thought planning for the JMT was arduous. But having to pick up and plunk down in a location 2500 miles away is daunting. How do people do this?

We've arranged a 2 bedroom apartment in Rockville. Its about a 10 minute walk to the Metro and a couple miles north of NIH (where there is also a Metro stop). I thought finding a rental would be a piece of cake, but it turns out that it's a pretty tight rental market. When you factor in a short term lease and trying to find a furnished place, then the options thin out considerably (to something near zero). Ultimately we took an unfurnished apartment and we'll end up shopping at Ikea for furniture - the delta cost between renting furniture (etc) and buying something functional but inexpensive at Ikea washes out at about 4 months. I figure that, worst case, we can donate the furniture at the end and get a tax write-off or sell some of it to recover some of the cost. This will be a big year for tax deductions - we'll probably be audited (oh boy!)

Around here we're trying to tie up loose ends and make arrangements for while we are gone. There are a million details to look after. Elise will be leaving school a couple weeks early so we've needed to make arrangements for finals. And we need her 8th grade books before we leave because the school year starts before we come home. I'm trying to finish important stuff at work, but my "big rocks" just aren't getting crossed off the list very quickly. At least the lamp I made for the local museum auction is complete; I just need to box it up and drop it off before we leave.

We're planning to fly out and drive back. We'll be buying the car I've been putting off once we get to MD. I've nursed my car along for a while now, but it's time to part company. It's in the shop now having a critical repair (small leak in the radiator) before I can sell it with a clear conscience. I'm hoping I can sell it before I leave or it will just sit in the garage, but trying to sell it is just one more stressor (not to mention trying to share a car with Becky).

Elise is "on her last nerve". The normal little things at school are getting to her (e.g. kids talking in class, typical 13 yo teasing, etc) and she's had a couple melt downs. She's finished with most all extracurricular activities except Girl Scouts and that wraps up next Monday. Clearing the books has provided some much needed downtime for her each evening. I was thankful that she didn't get her money in early enough for a CJSF trip to Knotts Berry Farm this Friday. Normally she'd be very disappointed, but I think she was relieved - one less thing to do.

Elise will be getting her hair cut short this weekend in anticipation of losing her hair from chemo and radiation conditioning. She's donating what's cut off to Locks Of Love. We've bought her a couple nice hats that she seems to like (and look really cute in). I think she's mentally prepared for this aspect, but I know it won't be easy for her. It's hard being different at 13.

This all sounds so awful, but we're trying to find the brighter side of things too. If Elise is healthy enough after she's released from the hospital, there might be some opportunities to do things in MD between visits to the hospital. Towards the end of our stay there she should be feeling much better and maybe our range away from home base will grow. This would open up some neat tourist opportunities. Elise and Becky keep talking about wanting to go to NY...

The Light Is Almost Green, Wait for It, Wait for It...

We heard yesterday that the donor had accepted the proposed schedule for Elise's transplant. There was the chance that they'd have conflicting plans or some need to move the dates around a bit, but apparently the proposed schedule works for them. So the current schedule has the actual transplant (aka "Day 0") occurring on 6 June '14 with a week of medical tests and then 12-14 days of "conditioning" prior to that. So we'll need to be in Bethesda on 19 May.

So now we can start working some of the details like finding an apartment, etc. I can feel my anxiety level creeping up just typing this...

In my phone call to NIH I also learned another tidbit. I'd asked "What happens if the donor's CD34+ cells don't mobilize for apheresis like Elise's?" That would be a bad thing since they do the donation nearly at the end of the "conditioning" process when Elise is totally medically committed to the transplant. The answer was reassuring (to me but maybe not the donor): they will do the old school method of getting the bone marrow directly through "aspiration" (i.e. a big needle), like they did when Becky donated 20 years ago.

We've got LOTS planned between now and when we have to leave. Elise is getting baptized on Sunday at Easter service; has a trip to Knotts Berry Farm with CJSF; has a performance at Disneyland. I have to complete an Arts & Crafts style lamp for the local museum auction; close out my ongoing projects and bring my temp backfill up to speed at work; finalize arrangements for house care; find an apartment; arrange to buy a car in Bethesda (which we'll drive home); etc. Becky has to wrap up things at the office; decide what we need to bring/have to make it through 4-5 months away from home; and deal with Elise and I panicking.

The next milestone will be the donor's full medical screening 30 days prior to transplant. That would be around 7 May '14. There's still the possibility that they could find something at that time that would require a replan that would impact the schedule.

By the way, in case you're wondering, the picture of the purple sage in bloom has nothing (intentional) to do with this post. I just thought it was nice (in a Mojave desert kind of way).

Disappointment with a Silver Lining

Elise's second attempt at apheresis this week was a bust.

We traveled to NIH on Tues and checked into the hospital that night. Elise got a private room because she'd tested positive for enterobacter bacteria during the last visit and this meant she was on "contact isolation" until they could retest and she comes up negative. They do routine periodic screening of all inpatients for a variety of things that pose a hazard for immunocompromised patients. Both Elise and her roommate during the last visit tested positive for something. Apparently it's not uncommon. It's kind of a pain, but like I told Elise, we'll be very happy they take these precautions when she's going through the transplant this summer.

After several hours of Animal Planet TV shows, they let us sleep until the 6 am wake up call for GCSF injections, blood tests, and then the never ending rounds of all the various medical and support personnel. I'm very impressed with the staff at NIH: they are all very caring and don't mind all the questions I ask (at least they never seem bothered). But thank god they have a Au Bon Pain in the lobby outside the wing Elise was in - a latte was what I needed to start the morning.

Based on the results of the blood tests Wednesday morning at NIH, the Dr's knew it probably wasn't going to work out. Elise's white blood cell (WBC) count was up but not as high as they'd anticipated and so the likelihood of collecting enough cells with the CD34+ surface marker (i.e. the subset of WBCs that include stem cells) was low. By the early afternoon they'd gotten the CD34+ cell count back and decided it wasn't worth putting Elise through the apheresis.

So we packed our bags, changed our flights, and came home late Wednesday night. Out to the east coast and back in less than 48 hours. Not a record for me, but pretty close.

Not all is lost though. They've updated the study protocol to allow Elise and others like her (i.e. those who can't produce a "rescue" backup set of stem cells for some reason) to participate in the study, so she'll be able to go forward with the stem cell transplant. As they've said multiple times, they've never needed the backup because the study uses a non-myeoblative protocol, so her own cells should be able to recover if the donor cells don't engraft. Still it would be nice to have a backup.

As usual there were at least a few positive things mixed in with the negative: 1) they've decided to forgo anakinra injections and stick with prednisone to address her colitis until the transplant; and 2) coming home early means that Elise can go to the "Touch of Class" Dance tonight. Both are good news to Elise. The anakinra injections were painful and she really disliked them (so did Becky and I). The dance is the last one this year and she was bummed that she'd have to miss it. When she first heard that the apheresis was off, Elise was pretty upset (she hates missing school). But then these two positives became apparent and her mood turned rosier.

We also heard that they've down selected to a single donor and are trying to synchronize donation schedules. Once this is complete we'll have a more firm idea of the transplant dates.

As of now we have no more trips to NIH scheduled until we leave for the transplant in May. Between now and then there's lots to do and prepare.

Apheresis Round #2

Elise and I are headed back to NIH on Tuesday for another try at apheresis. This is the same process that stem cell donors go through to donate their stem cells. In Elise's case the cells will be frozen and used as an emergency backup in case the donor cells don't engraft properly. It's an unusual step and they told me that they've never had to use the backup, but it's worth any additional piece of mind we can get at this point.

This is round #2. We tried this once already in late February but Elise's stem cells didn't "mobilize" sufficiently; that is, they didn't migrate from the bone marrow into the blood so that they could be collected. The doctors think it was because she'd been taking a medication (anakinra) that they have little experience with in the transplant setting. They'd stopped the suspect medication a week before the first round of apheresis but that wasn't enough, so this time we stopped the anakinra injections a month prior to the apheresis.

So Elise has been happy because she hasn't had to endure the anakinra injections (the serum is ph acidic to it burns for 5-20 minutes after injection). And it was timely because we took a vacation to Orlando over spring break and we didn't need to fuss with daily injections. But the break is over: we start GCSF injections on Sunday until the apheresis process is complete. GCSF causes the stem cells to migrate into the blood stream for collection.

Apart from apheresis, in general things are moving along. I swapped emails with the person at NIH who does the donor matching and she indicated they should complete down selecting to a single donor (from the initial seven "10 of 10" matches) in the next week. This will lead to a more concrete transplant schedule since the donor may have other commitments during the time frame we've currently targeted for Elise's transplant. Then we can start more detailed planning (like lining up an apartment in Bethesda).

Elise, Becky and I are all becoming increasingly anxious. Elise's anxiousness has been compounded by being away from school for 2 rounds of apheresis. It's affecting her grades and this makes her even more anxious. Becky got approval to take leave from the office during the transplant (they are exempt from FMLA because they have a small office). But they need to find a "traveler" physical therapist to fill in behind her or the office won't function properly and this uncertainty isn't helping. As for me, my office agreed immediately to let me take leave. In fact they've bent over backwards to help, even offering to let me telework part time which would spare some of my leave. They have even organized a bone marrow donor drive! I have plenty of leave built up, but staying partially engaged via telework will probably help my sanity. But I'll be leaving behind the office and my primary duties there and I really don't feel good about it. So for all of us, our work ethic is creating anxiety. I guess that's a good problem to have.

So we're continuing to move forward. Today Elise and some of her Girl Scout Troop 56 members are hosting the culminating event for their Silver Service award: a "Me and My Dog 5K" to raise donations for the local animal shelter. Should be fun.