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 took Maggie to the Nasher Museum of Art at Duke. It’s walking distance from Ronald McDonald House. On Thursday nights it’s open late and often quite empty of people. Becuase of all the art, it’s also very low on UV light, which is also great. Maggie is super light sensitive because she’s taking a prophylactic anti-fungal called Voriconazole. She will often get what appears to be a sunburn from being in direct sun for about 20 seconds.

Anyway, at the Nasher, they were showing a video tribute to Buddy Bolden. Many consider Bolden to be the originator of what would later be called Jazz.

The movie was super creepy. Apparently, Bolden lived a tortured life and was institutionalized at 30 for schizophrenia, which was something they tried to and succeeded at capturing in the film. Maggie is too young to grasp the adult themes but found the bright lights, big people, and droning music fascinating.

Maggie didn’t get a platelet transfusion today for the third day running. That’s great news for a couple of reasons.

First, platelets are one of the last types of blood cells to engraft, typically. So this a great sign of engraftment progress in general. Her platelet count was 32 in the morning yesterday and 28 this morning with nothing added in between. A decline that small over a day can pretty much only mean that her body is producing her own platelets. Not yet fast enough to replace what is used on a daily basis, but much closer.

Second, platelet transfusions are one of the main things that keep Maggie going back the hospital several times a week. Getting off of them means getting some more daily freedom back.

Here’s Maggie in the clinic testing the stretchiness of a rubber glove

You might be wondering, how does one exercise while swapping one’s DNA with someone else? The answer, by walking up and down an L-shaped corridor over and over. Today we look at the 5200 hallway. Since Maggie spends 99 percent of her time in her room, the hallway eventually comes to feel like “outside.” One of the things I do with Maggie as much as possible is take her for walks, and I find myself using the phrase, “want to go out for a walk?”

Today we go inside room 5203, where Maggie lived for the last 45 days. She only left the unit twice during her stay (not counting the pre-discharge practice field trips on the last couple of days) to visit the PICU both times. Living in this room is a lot like living on a boat or RV. Everything is a smaller version of itself, and we have many fewer total things. Once you get used to it, having fewer things is actually really nice. Yay minimalism 🙂

Happy birthday to my little girl! It’s Kaya’s 6th birthday today. (She’s was very excited). Also, a target of opportunity: Angelica, our Au Pair from last year, called to wish Kaya a happy birthday and I was able to get her, Mila, and the girls in a single photo 🙂

Tracy says I need to post on the blog more, so I’m going to start with a three-part series tour of “5200”, the Duke Pediatric Bone Marrow Transplant unit, where Maggie has lived for the last 45 days, and I’ve come to think of as my second home.

Other than Tracy, Maggie, Baba, and I, no one goes through the airlock to see Maggie unless they’re either medial personel, or under my direct supervision.

I go in and out of the airlock all the time shuttling supplies, so contact precaution is very important for me, and very stressful because I could be bringing in unwanted pathogens. The airlock is where I take a few moments to meditate and mentally ramp up my contact precaution mechanics.

On day 2 of Maggie’s hospital stay, one of the nurses put up a piece of paper and asked me to write down every time she ate anything. So I did. And when I ran out of room, I started a new paper. And soon I had a wall of papers. And this wall of papers represents a sh**load of work on my part. Because I stopped weaning Maggie when I found out she was going to get a transplant because it is clearly the best nutrition for preemies with developing immune systems and there is some data to support decreased risk of gut GVHD with breastmilk. But then she quit breastfeeding on day 5 or so, since her mouth hurt and bottles are easier. And this has resulted in me pumping around the clock for the last 6 weeks, while also taking care of a sick hospitalized baby. But I truly believe that it has helped her get through transplant, as there has not been a single day where she didn’t want at least a little milk, and she has maintained her weight and came off TPN as soon as she engrafted. So, I am proud of this wall of papers AND excited because I coaxed her into breastfeeding just a little bit today. (Also, I just did the math, and I have pumped for 46 months of my life – that is nearly 4 years!) Otherwise no big updates – CMV levels are still high but lower than before. They are still tossing around the “D” word.

Today was extra special because Tommy and I switched off mid-day and I took Kaya and Laney out to lunch. The first hour was a pretty horrendous show of crying for attention and fighting with each other, but the post-food second hour was nice. Meanwhile, Maggie had a great day at the hospital, and now begins my week to try to convince our BMT team to discharge Maggie. A lot of things have to fall into place – she needs to get off diuretics (or at least on a stable regimen), she needs to prove that she doesn’t need platelets daily, she needs to have a viable plan for taking oral medications, and she needs to be on a limited number of IV meds that I can do at “home” (ie, the Ronald McDonald House). Her CMV is also still active, but I doubt that would keep her inpatient. Currently she is on 6 hours worth of IV meds, which kind of seems like a lot, considering she will have a clinic visit every day which will take a few hours as well. But she is looking quite good – she is very active, eating well, and feeling good. We went down to the Children’s outpatient clinic waiting area today and (after I obsessively disinfected everything) she walked for a while using a toddler chair.