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.
Day -8 in the books – was pretty much exactly like day -9. So instead of hospital updates, I’ll update you on the fact that NC recently passed a new legislative budget that includes funding for the addition of several more federally-recommended newborn screening tests on the current panel, one of which is MPS-1.
There was a pilot study to support this effort that ended March 7, 2017. Maggie was born March 9 – so had she been born 2 days earlier, we would have known her diagnosis at birth and she would have been transplanted much sooner and babies that get transplanted sooner do better (she is still young though and diagnosed at favorable age, so I think she’s going to do great). But this disease is ideal to be included on the newborn screen, since it is asymptomatic at birth and there are known disease-modifying interventions. So I’m glad to see NC is at least somewhat catching up with federal recommendations on newborn screening.
And here’s your Maggie pic of the day:
Day -9 is pretty much under our belts – Maggie seemed to feel great and played ALL day today, after we got through the every-30-minute chemo drug levels overnight. It is hard to be away from my “home” hospital, if you will, but have quickly figured out that my world is only as big as the transplant floor so it doesn’t really matter. Today I spent a lot of time comparing Duke hospital and UNC hospital, from a “resident caregiver” perspective. Here’s the scorecard:
Size/quality of hospital rooms: UNC>Duke
IV beeping tone/loudness (or lack thereof) Duke>UNC
All things food service UNC>Duke
Free monuts Duke>UNC
Lack of overhead code calls Duke>UNC
Wifi guest access UNC>Duke, but barely
Ability to control the temperature in your hospital room UNC>Duke
Recliners in the room that actually move where you want them to move Duke>UNC
A draw perhaps?
I’m going to have to figure out more interesting pictures than just Maggie with an NG tube but that’s pretty much my whole life at the moment!
A successful day one! Or minus 10, depending how you count. Maggie had a Hickman placed, an NG tube placed, and a skin biopsy (still don’t fully understand the rationale for the skin biopsy – something about fibroblast culture to inform chimerism studies in the future, as it seems that skin fibroblasts are derived from blood cells). I’ve decided it’s pretty near impossible to keep an NG tube in a 15 month old for two + months, but we’re going to try. We’ve already played with all the toys I brought 3 times. And continuous pulse ox is my nemesis. Tonight she starts her chemo with busulfan every 6 hours. We were up at 4am today for a 6am time of arrival, so I’m going to attempt a bit of sleep before the fun hits. Welcome to all the new readers – based on blog stats, you are plentiful.