Getting in the Rhythm (D+121)

"The most effective way to do it, is to do it." - Amelia Earhart

We're all getting back into the swing of things and this week should sort of be the last step for the new normal as Becky joins the salaried workforce again. Till now she's been off work which has made getting Elise started back to school much easier since she can run errands, visit the school to give Elise meds, etc. I started back a couple weeks ago and it was almost like I woke up and the clock had advanced 5 months. Weird, but then my coworkers have been great and everyone has been patient while I try to dust off the cobwebs.

Elise's new normal is a school day without PE. There are at least 3 things to worry about: exposure to the sun might trigger GVHD; some of her meds make her sensitive to sunlight; and her platelet count is low so she'll bruise badly if she has a accident.

The transplant protocol Elise went through is meant to reduce the chances of GVHD, but it also means that she's exposed to the threat for a longer period. Most BMT patients are mostly out of the woods for "acute GVHD" by day 100. Elise will be watched for 6+ months. Fore Elise, the pretransplant conditioning drugs will stay in her system for about 6 months, so she needs to take sirolimus at least that long and probably longer to prevent "acute GVHD". After that, we'll be watching out for "chronic GVHD" which is a rarer and different beast.

We've started going to Children's Hospital Los Angeles (CHLA) once a week on Friday's for follow up care. It's a strange transition from NIH. First CHLA is targeted at children so the noise and activity level when you get off the elevator in the lobby is quite a bit higher than NIH. Secondly, CHLA does do research, but it's not a research hospital first. This means there are a lot more patients wandering about. Young patients. And generally mom and/or dad have more than the one in tow. The medical team and other staff are all nice and seem to know their stuff, but it's different and requires some mental adjustments on our part.

Another adjustment for us is the lab test rhythm. Sirolimus requires careful monitoring of the level in her blood and frequent adjustments in dosage. The blood tests are a problem for two reasons: 1) they must occur 24 hours after the last dose; 2) they can't be processed at most hospitals (including CHLA and NIH). We've had to plan a week ahead and try to give Elise her daily meds when we think her weekly blood test will be. Of course this means she needs them in the middle of the work and school day which is a huge hassle for all of us. The second problem means that we are limited in what labs we can use. CHLA (and NIH) send their tests out but they get them back in a few hours. Here in Ridgecrest (where our insurance will pay 100%) they send them to Outer Mongolia and it takes 3-5 days for results. Not exactly timely. We haven't quite got this part of the new routine worked out yet.

As for Elise's health, outwardly she's doing great. She asked to start dancing again this past week so we're letting her attend class once a week for now. And she's been doing things with friends (movies, etc). Her weight is very slowly beginning to rise. Her appetite still isn't huge, but weight gain, even if it is slow, is better than weight loss. And the hair is starting to be noticeable, at least to me.

Internally, many of Elise's blood levels are still very low. I'm unclear on exactly what we should be seeing but the doctors don't seem alarmed. A week ago it looked like she might need a transfusion because her hemoglobin level appeared low, but the next test came back and it had recovered enough to ward off the transfusion. Transfusions are somewhat normal for post-BMT patients and they've been surprised that Elise hasn't needed any since right after the transplant. But CHLA has different protocols and based on discussions with the staff it seems they are more likely to order a transfusion than NIH was, but so far Elise hasn't had one.

It's hard to believe but we've already scheduled Elise's 6 month checkup at NIH. It'll be more like 5 months but it's inside their acceptable window. Elise and I will travel back the weekend before Veteran's Day and visit the medical team for a 1 day checkup. Veterans Day is a holiday for Elise and I so that will limit the amount of time we're away from school/work.

As for me, I'm mostly back in the swing of things. I love being back in the desert and having access to the trails in the foothills around our house. I managed to get in a day hike in the Sierras after we got home and hope to squeeze in an overnighter before the winter weather makes the mountains inaccessible. On top of that I'm eyeing all the wood laying around my garage waiting to be turned into something.

Kearsarge Peak from Mount Gould, Golden Trout Lake in foreground

Party at the Bechtel's Saturday (D+104)

"We can only be said to be alive in those moments when our hearts are conscious of our treasures." - Thornton Wilder

We're hosting a "Welcome Back Elise" party at our house in Ridgecrest so you can see Elise and also to say Thank You to everyone that has been so supportive over the past many months.

What: Welcome Back Elise (very low key) Party

Where: The Bechtel's in RC (call or send me a message if you need the address) 

When: Saturday, 4 Oct 2014, 4pm to 6pm

All of Elise's friends, family and wide circle of supporters and well wishers are welcome. We'll have soda, beer and white wine on ice along with some light hors d'oeuvres. The pool will be open (weatherman says "Sunny and Hot") but the AC will be running indoors too. If you'd like something in particular feel free to bring it, but please no gifts as we ran out of Thank You notes a long time ago (you guys are great!) Oh, and our fridge broke while we were gone so don't bring anything that needs refrigeration (the new one arrives next Tuesday).

Now on to my blog update:

After driving 3080 miles of driving through 11 states in 7 days, we finally made it home to Ridgecrest on Tuesday (9/30/14). We saw a lot of the beauty of this great country and some really cool things along the way, but we're enormously thankful to be home.

Elise is feeling great. The minute we got into town she ran across the street to visit her friend Gina and then they went to a volleyball game! She's been very anxious to get back to school ("I feel like I'm ditching") so she started today instead of our plan to have her go back next Monday. The picture above is her "First Day of School" photo this year. She's kinda brought new meaning to "skinny jeans", but the weight should gradually come back along with the hair and eyebrows.

We are visiting Children's Hospital LA for the first of many weekly follow-up visits this Friday. Elise isn't completely out of the woods yet. Because of the type of transplant protocol she underwent, she's still open to "acute" graft vs host disease and will be for a few more months. This means that she's taking an immunosupressant to prevent GVHD, and this med means she's still more likely get opportunistic infections than the general population. So they need to watch her closely for a few more months. Hopefully by Christmas time (when the effects of the Campath wear off) she'll get to taper back on the weekly visits and the meds.

So we're trying to work our way back into the routine here at home. Elise is back to school, I'll start work again on Monday, and Becky goes back in a couple weeks. I'll try to provide some periodic updates but they will be few an far between unless something comes up wrt Elise's transplant.

Thank you all for your support, whether it was a smile, kind word, one of a seemingly endless stream of cheerful cards, mowing the lawn, or the truly nasty task of cleaning the rotting food out of our freezer when it died while we were gone. All these were heart felt gifts that made this an easier process for us to go through and we are truly grateful!