When Tommy and I planned our wedding, we argued about very little. All the details we either agreed upon, or one of us didn’t care enough about to argue. But we both wanted a wedding picture with the chapel in the background and one of the only things I can remember disagreeing about was whether to take the picture at the Campus Dr/Flowers Dr circle, or on Chapel Dr closer to the chapel. I think I ended up getting my way (the closer picture), and then regretting it and wishing I had the distance picture. Well, Maggie and I went for a run the other day after it cooled off (I ran, she stroller-ed) and stopped at the Campus Dr circle to shoot a picture of our own. The chapel is pretty tiny in the background though…so maybe I was right after all.

Kaya, Laney, Tommy, Yoya, and Dylan went camping out past Asheville this weekend. Sounds like it was a bit of a wet choice of weekends, and they sounded pretty tired Saturday evening, but I got lots of picture texts that looked like they at least had a little fun at a local folk festival. We’ve had a quiet weekend here – Maggie is feeling pretty ‘blah’ today with barely a smile, so hopefully she is not brewing anything more serious. I am enjoying her double nap, though!

No big news from the Rose front in the last few days. Maggie is still doing fine, although had 24 hours or so of decreased appetite and vomiting of unclear cause, but she kept her weight/labs stable and never stopped smiling. She has really grown up a lot in the last few weeks and it’s nice to see her progress a little bit in terms of language and locomotion. She will now walk with only one hand of support, which seems to approximate the right walking posture. She turns full teenager twice a day and zones out to the Ipad while I hook up her meds. And I haven’t seen the other girls for over a week, although Kaya is feeling better and Laney only has a cough. They are headed out to the western part of the state this weekend for a late summer mountain getaway with Tommy, Yoya, and Dylan.

Found this picture gem in the “Duke Pediatric BMT Family Support Newsletter,” in which Maggie is heavily featured. I am pleased that it feels like this was already a long time ago. Tommy made buttons one day (while Maggie was in the hospital) with the BMT family support team and brought them home for the girls. But, it turns out the nurses all wear buttons of their patients and there’s a bit of an unwritten rule on 5200 that you are supposed to give a button with your kid to your primary nurse and favorite nurses. We unfortunately broke this rule, because we didn’t have any buttons left, and didn’t make any of just Maggie. And then I never got it together to make more buttons (Maggie tended to sleep through button-making hour). There are lots of unwritten rules on 5200 and I’ve actually considered making a new binder – there is an official Parents’ Handbook, but they really need an unofficial one. Things I would include: 1) You are supposed to make a button for your favorite nurses/primary nurse, 2) To silence an IV beeping, hit the yellow button on the middle screen of the IV pole, 3) Food service is a nightmare and there is lots of food you can order that is not on the menu you are given, 4) Steve the sharps guy is super nice and you should befriend him and he will make you a wood carving, and 5) If you ever go to the PICU, ask for room 9 or 10.

Thankfully no big updates here. Maggie has had a mild GVHD rash that is exquisitely sensitive to sun, so she is relegated to long pants/shirts and staying inside with shades drawn for the rest of the summer. She remains a fast breather, but is otherwise doing pretty well. Her platelets finally hit 51 yesterday, so she has officially engrafted them, although I wouldn’t be surprised if they go back down based on the slow speed of rise. The biggest news is that Subdivision #1 of the family has at least one communicable disease – Kaya has a fever and Laney has a cough. So that side of the family is officially quarantined. It makes me extra glad Maggie and I decided to stay at Ronald McDonald House, although it also means that Tommy is exposed and probably shouldn’t visit for a while and I am going slowly crazy singing “Itsy Bitsy Spider.” Yoya and Dylan have visited a few times to allow me some adult conversation, as has Baba and Gammy. Here’s my little warrior in clinic yesterday when she found out her platelets were >50!

Yes, I’m the only one who thinks this is funny. Sorry, everyone.

Maggie and her new best buddy Mila finally got together for some play time! Here they are playing ball at Ronald McDonald House.

Also, this was the first day that Maggie didn’t have to go to the hospital at all for either lab work or some kind of infusion. A full day off. The day felt strangely long.

For a long time, Maggie’s platelets have been dropping every day, requiring daily replacement. A few days ago, we reported that we skipped a few days without platelets because the rate of decline had slowed. In the last couple of days, however… they went up! The doctors were very excited. Median time to engraftment for platelets is about 60 days, and it’s only been 45, so this is well ahead of schedule. Also, platelets are the last infusion we’ve been going to the hospital for, so there is less pressure to travel to the hospital every day. Her levels over the last few days were: 32, 28, 29, 31, 38 (all without anything added).

To give you a sense of the range, the technical criterion for platelet engraftment is 50+ without any transfusions. The floor for treatment was 20, with infusions given for any score below 30, and a child without a transplant would typically score at least 150.

I stepped out from bedtime to get a flashlight, and when I came back, this is what I found the girls doing.

I am starting to slowly ease back into an actual life – I took Kaya to the mall (her choice) and Laney to the toy store, playground (both her choice), and out for enchiladas (my choice) on Saturday, and then took them both to the pool on Sunday while Tommy watched Maggie. I still won’t leave Maggie for more than 3 hours so she doesn’t have to take a bottle but it’s a start. She also hasn’t needed platelets for DAYS and I am enjoying our extra time out of clinic. I can also now give IV magnesium and Neupogen at “home”, as well as IV cyclosporine and ganciclovir. So Tommy and I pretty much run a full clinic. But it has enabled me to do some work and even watch a few tennis matches on TV while playing with Maggie. We are still a long way from any sort of normalcy, but we are slowly adjusting. Here’s Laney and I at El Rodeo.