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.

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

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!