Maggie and I have settled back into Duke 5200 – this time we have a purple room on the right side of the unit, instead of a yellow room on the left. The parent “bed” (read: bench) seems less forgiving than I remember, otherwise, the room is pretty much the same as last admission.

Maggie had her pericardiocentesis this morning – they took off 50cc, which doesn’t sound like that much, but in my review of the literature, it’s maybe on the small side of average for effusions that get drained in a kid her size (5cc/kg). She did fine with the procedure, although was pretty cranky the rest of the day (from anesthesia? or having a drain in her heart? or being back in the hospital? or being tired from partying all night last night instead of sleeping? all of the above?). I read a few papers on post transplant pericardial effusions – they are more likely in young kids (<2), cord blood transplants, kids on cyclosporine, and maybe more common in kids with metabolic syndromes (the metabolic syndrome correlation is in the same direction in all the papers but not ever significant due to power – someone needs to do a meta-analysis. Someone other than me). Interestingly, one of the papers states that all the kids with effusions had vomiting beforehand, which doesn’t make any sense to me (and her team of docs here doesn’t think it’s related), but maybe is why she has been so pukey lately. I see absolutely no difference in her symptoms so far after drainage though. Anyway, we are here until her drain stops leaking fluid and we are settling in for the long weekend.  Here is Maggie pre-procedure today while she was still happy.

We were SO excited to have pleasant weather last night and Maggie could not wait to go for a walk outside. If it’s too hot, she gets too short of breath to spend any time outside (I freak out when her breathing gets super labored and bring her back inside) and she can’t be in any direct sunlight. So last night was the first opportunity in months for her to spend more than a few minutes in the fresh air. And she was SO happy. She is so sick of our little apartment and walked holding my hand for farther than I’ve seen her walk in the last week or two. She is still a little bit pukey and sleeping more than before, so it was nice to see her happy and active. Fall cannot come soon enough. Summer is typically my favorite season, but I am ready to put summer 2018 behind me.

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!

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.

I have officially finished transforming our apartment at Ronald McDonald house into a toddler’s dream house. First, I couldn’t handle the anxiety of a baby with a platelet count of 30K to learn how to walk on hardwood floors, so I covered half the apartment in a play mat. Second, I pushed the two double beds apart and dragged one of the mattresses onto the floor, so I could leave Maggie on a soft surface when needed without risking her falling off a bed (if I had to run in the other room to get a new saline flush because she grabbed the first, as an example that happens all the time). Third, I put a pack and play in the bathroom so she wouldn’t have to sit on the floor and play while I showered. And lastly, I distributed our gigantic amount of medical supplies into a logical and easy to access drawer and cabinet network. Maggie is still doing well, although still looks like she is breathing quite heavy a lot of the time. I spent the night on Wednesday awake counting her respiratory rate (which I counted in the 60’s for a few hours, which is a really high number to me). Her team thinks it is still just her being out shape from transplant + Hurlers + her new post-transplant beer (milk?) belly. Otherwise, she is still getting platelets every couple days, IV magnesium nearly daily, Neupogen every other day or so, and IV infusions at home. But every day of the same is a successful day at this point. Day +42 today!

Today was one of the harder days so far, even though Maggie is doing just fine. It’s a long list of small things that have left me exhausted tonight – she has meds due at 7am and meds that end at 10pm, so essentially I can sleep a maximum of about 9 hours, except she wakes up several times a night which leaves me behind. And she now naps during her infusion appointments after she gets Benadryl before platelets, so I can’t sleep then (unless I let someone else take her, which I will not yet do). Plus giving her 4 IV infusions a day, plus drawing all her labs, plus coaxing her to take all of her oral meds, plus a 5 hour clinic/infusion visit, plus trying to get her to keep her mask on, etc, etc etc is hard! So this is me letting you know that life is harder for Tommy and I after discharge, and we appreciate your continued support. I’ve been asked a lot in the last 24 hours when I’m (physically) going back to work and Maggie is still a long way from a kid that I feel comfortable leaving with someone other than a nurse or her parents for very long. Photo today: I tried to give her a real bath tonight, which was great, until I had to take off the tape that was keeping her line dry, which made her cry for longer than bathtime. But here’s a pre-tape removal picture.