Lots of updates this week! Tomorrow is day +100 after transplant, which is another big transplant milestone. It’s also the week where kids have a ton of testing to see if the transplant is working. So far Maggie’s new immune system seems to be doing great – it has cleared her CMV and her rhinovirus, and the numbers/percentages of her lymphocytes are good at this point (her CD4 count, as Tommy described earlier, is 535, which is great for day +100). And her pericardial fluid is “stable” over the last couple weeks. And her other bloodwork is doing just fine as well. And she finally seems to have a little stamina. All that is great news. Her enzyme level is still pending, but her team feels confident it will be in the normal range too, at least in her blood compartment, since that’s where her blood cells live. So she is doing about as well as she could be at this point. I still have pangs of (…I’m not sure what the emotion is…sadness? jealousy? anger?) when I remember that a transplant does not cure her. But we’ve learned to live in the moment and this coming home moment is pretty darn good.
Last weekend we had a rare opportunity where both older kids were healthy, so we let them come visit Maggie and me at Ronald McDonald House. Kaya slept over on Saturday, and Laney slept over on Sunday. Both kids were super excited to visit/stay over, and Kaya was even downright helpful with Maggie, but I was pretty exhausted by Monday morning. My parenting strategy has always been to take everybody outside or somewhere fun so I don’t have to entertain, so last weekend felt like I constantly had to put on a show. And then a combination of scheduling confusion, tornado warnings, and an early echo appointment led to Laney coming to Maggie’s echo on Monday. Which I believe was the highlight of her stay, because I let them watch the Ipad and eat Cheez-Its during the echo. Anyway, this weekend, everybody has a cough at home (yes, again) so Maggie and I are spending this weekend by ourselves.
Maggie repeated her Echocardiogram (an ultrasound of the heart and surrounding regions) today. We were hunting for a possible build up of fluid in the pericardium, which would be a repeat of her earlier condition. There was nothing particularly noteworthy, so no surgery for now. Great!
Today at Maggie’s clinic visit we got the news that she is CMV Negative. This very likely means that her adaptive immune system is now back online and clearing viruses. Full celebration pending official count of CD4 cells.
Here’s my mental model of why I’m so excited.
Before Maggie even started her pre-transplant work-up, more than 4 months ago, she was a known carrier for CMV (a very common, usually non-noteworthy virus). During the transplant process, the immune system is almost entirely eliminated. Unsurprisingly, with nothing on board to fight bugs, the CMV reactivated, and she became viremic (active virus detectable in the body) for CMV. To keep the virus at bay, anti-viral medications were used in lieu of the normal immune system. This mostly worked to keep her stable, but the viremia persisted. Anti-viral drugs can’t fully eliminate CMV, so it hangs around persistently.
Fighting a virus such as CMV is one of the most complicated things that the immune system does. It requires a type of cell called a CD4, T-cell, which is a type of lymphocyte, which is a type of white blood cell. Those are the cells that go to the thalamus, and get trained to look for foreign viruses and run around killing them. This is a component of what’s known as the adaptive immune system.
The fact that she is now CMV negative, meaning no detectable virus, suggests that she has active, working CD4 cells. Phew, long explanation. Anyway, I’m happy about it.
Day +85. We are all “sheltering” in our respective locales today for the “hurricane” that is supposed to come through. So far I have seen the leaves move a little on the trees and per the forecast, it’s not really supposed to get any worse here. But everything got cancelled today and we didn’t want Mila or Gammy driving in the “hurricane,” so Maggie and I are just hanging out for the next 3 days.
We got bored in this ever-shrinking apartment and ventured out to the playroom – normally I won’t let her play there because it is not clean, but this time I brought a huge supply of bleach wipes and wiped down half the room. She was pretty happy, but only for 20 minutes or so, since she still lacks stamina. Her repeat echo on Wednesday showed a small amount of re-accumulation of her pericardial fluid, but not nearly as much as before, and so we are still not sure which way this is going to go. She has another echo on Monday and hoping it will be more definitive. In the meantime, we will keep looking for the hurricane.
Today was Laney’s first day as a “big kid” at her Pre-school Sounds & Colors. That’s the term they use for the oldest classroom. The girls have really latched into the term, as you might imagine. Laney was super excited when I dropped her off this morning.
Maggie was discharged from the hospital today, and it was a great day. Everyone got to go outside, and all three girls hung out with mommy, Gammy, and Baba. Great Sunday 🙂
Tracy edit for the medical update: Maggie’s pericardial drain pretty abruptly stopped putting out fluid and an echo confirmed there is minimal fluid left around her heart, so we are cautiously optimistic maybe we can avoid a pericardial window/surgery. But she has a repeat echo scheduled for Wednesday and if the fluid reaccumulates, she’ll go to surgery. But we get to stay at RMH in the meantime!
I was pretty strict with both Kaya and Laney at 18 months that 1) no screen time and 2) no pacifiers except to sleep (for Kaya, I had already taken it away cold turkey by now). Maggie, however, I fear I am turning into a ipad/pacifier monster. Because this is now day 11 in the hospital (this time) with a toddler that feels perfectly fine. And Mr. Ipad and Doggie the Paci are really getting her through. Luckily they let us roam around the hospital today. Her drain is putting out less and less and tomorrow she will get another echo to make the final decision on her need for surgery, which is tentatively planned for Monday. I have managed to get her hospital interventions down to: vitals every 8 hours, labs only three times week, electrolyte replacement on the outpatient scales (instead of the aggressive, inpatient ones), and all oral meds. So she hasn’t even been hooked up to an IV for days. Hoping we are not here too much longer.
Kaya started first grade last week and we got word today that Laney will officially start “preschool” next week (which is really just the oldest class in her daycare), and they seem so grown up all of a sudden. Laney gets to switch classes with her best bud Molly and celebrated her promotion by having ice cream with daddy today.
Maggie is doing fine and her body is still working hard to dump fluid into her pericardium. She is likely headed down the surgery route, but no details as of yet. Poor little pumpkin!
We had a VERY quiet long weekend here at the hospital. Maggie’s pericardial drain is still putting out plenty of fluid with no end in sight, but she is happy and feeling fine. We have played with every toy on the floor at least 10 times. We are essentially in a holding pattern to see if she is going to need surgery (called a pericardial window) or if this fluid fluid will slow down on its own. Albeit annoying and somewhat scary, this is a very standard complication for the BMT team here, so they say. Here is Maggie playing peek-a-boo at lunch yesterday.