Many congratulations today to our good friends James and Niall today on their wedding day. Maggie and I celebrated from the hospital, and the rest of the family celebrated in person in Boston. I heard they had cheesecake and smarties – something for everyone! A picture with the happy couple is below.

Meanwhile on day +2, Maggie is feeling the chemo a bit and had a harder day than prior. The NG saga continues as the report of a magically appearing NG tube was apparently false (or they lost it again) – suffice it to say that I am very unimpressed that Duke cannot manage to come up with a proper sized tube for my baby. But if that’s our biggest issue, I can hardly complain.

I find it oddly calming that Maggie’s transplant day also fell on the summer solstice. For some reason it makes me feel like the karmic universe really thinks it is a special day. And now, the days will just get shorter and shorter until engraftment! We had a pretty uneventful day, which is exactly what we hope to have every day. Duke still had no NG tubes in stock today, and I got worried about waiting too long since her platelets are dropping – and I have been having a hell of a time getting her to take oral ursodiol – so I decided I’d just figure out how to borrow one from UNC (with full intention of paying for it at some point). Magically, however, when Duke got wind of my plan, they found an NG for her! So NG tube placement is on her agenda for tomorrow. She is still feeling pretty well, although was slightly more cranky and a bit congested today so her mucositis may be kicking in. Tommy and the girls flew to Boston this morning and many thanks to Baba for spending the day to give me a little reprieve.

We made it to the first “milestone” today: her actual transplant. It went as expected, although the syringe was disconcertingly tiny. I am excited that we get to start counting days as “plus one” and beyond tomorrow, although she is currently feeling okay and the hard days/weeks (months?) are still to come. We had a brief “re-birthday” party to mark a new beginning for Maggie. She was cheery all day because it turns out that the entirety of Duke Hospital is currently out of size 6.5Fr NG tubes and they had to order more, so Maggie gets a several day reprieve from her NG. She therefore got to look snazzy for her transplant photos. Here is Maggie saying “Gimme those stem cells!”

I’m feeling quite bad for Maggie as I write this post, because her NG came out tonight after she puked all over the place and I was helping her change clothes. Although I watched it get put in, I didn’t realize just how tiny she is and therefore how tiny her NG tube is. She literally just yanked on it for a brief second and it was out. So the torture of NG tube replacement is about to happen to her again. Right now she fell asleep waiting for the nurses to get ready. But I did get a few minutes of snuggling with a face tube-free baby, which felt oh-so-good. Otherwise she is doing great – the big transplant day is tomorrow. Didn’t take any pictures today – will shoot a few of the pomp and circumstance tomorrow.

Steady goes it for Maggie on day -2. She finished chemo today and overall had a pretty good day. It’s been fun to see her language comprehension still progress, even with everything else going on – in particular, she has gotten really good at saying “no” since we’ve been here. Also, two days in a row during rounds, she has listened to the conversation for a few minutes, and then looked at the team of doctors and waved Bye-Bye, as if to dismiss them. It is pretty cute. And she was all smiles before bedtime!

We were very happy to have daddy come do laundry visit us again today. Maggie had a rockstar day – only one more dose of chemo tomorrow to go. We spent our time perfecting Maggie’s artistic skills – I call this one “AntiThymocyte Goblin”

I got word from Virginia today that the Rose family barbecue was a roaring success. Kaya and Laney played with their cousin Kaia and I saw lots of fun pool pictures. Today they ventured to Kings Dominion and both kids moved up in the height rankings to open up all new ride options. Here is Laney celebrating her wristband of vertical advancement.

Meanwhile, Maggie is rocking her Cytoxan on day -4 and has started drinking substantial amounts of milk again. Poor baby has been so compliant not pulling at her NG but it clogged (which was actually a substantial kink that no amount of coca cola was gonna fix) and she had to get it replaced yesterday. But today was all smiles and playtime. On to more chemo + ATG tomorrow…

My parenting strategy has made a complete 180 from “How do I minimize screen time for the kids?” to “How can I make interest in screen time last longer?” So far the winning formula includes: put the screen out of reach, put on Elmo, add cheerios for boring parts, and make it loud enough so Maggie can actually hear it.

Overall day -5 went great – she magically started smiling again and drank a bunch of milk before bedtime. First dose of cyclophosphamide complete and cruising so far. And I am a big fan of weekends on the BMT floor so far – as much as I like all the volunteers, social workers, family support people (there are 3 employees just dedicated to peds BMT family support – the entire UNC cancer hospital doesn’t have 3 family support people!), child life support, nutrition, PT, OT, speech therapy, etc, I kinda liked not having anyone knock on my door to “check in” today.

Maggie is halfway done her chemotherapy infusions (and done with busulfan) and she’s starting to feel it a bit. Seems like she is having intermittent nausea and is completely refusing milk (either nursing or from a bottle). But she is still eating her favs like applesauce and cheerios. Also had her first unit of blood and first fever – a bit early for a fever in the transplant course and I’m hoping she’ll stay without fevers for the weekend and can stop antibiotics before her blood counts drop from chemo. Otherwise we’re doing fine – we finally met her 20 month old next door neighbor today who is super cute. Maggie is on contact precautions from her recent rhinovirus (aka, cold) and therefore she is not allowed to be in the same room with any of the other kids, so it’s been hard for me to meet any of the other families here. And all the nurses and doctors seem to be walking on eggshells when they talk to me (I think because I’m an oncologist?), so it’s a bit isolating. But luckily I have lots of local folks that have come to keep Maggie and I company pretty much all day.

Tommy and the girls are headed to Virginia for the annual Rose family cookout at his uncle/aunt’s house. It’s always a lovely weekend and I am sad to miss it.

(This picture is actually from yesterday – I didn’t take any today!)

Kaya had fall kindergarten school pictures taken last year, but for some reason I didn’t like the pictures and didn’t order one. She apparently noticed and was a bit bothered by this, and when spring pictures came around, she made sure to try very hard to smile well and she was SO proud when she brought home the proofs to show me. They really need better backgrounds for school pictures, but otherwise I love it, mainly because I can feel her effort and pride in this picture. Also notice my grown up little girl with a fit bit.

PS – Maggie’s doing great. Smooth sailing day -7. Eating less, a little pukey after her meds, but playing just as much.