Maggie and I have felt a little homeless lately – Tommy and I arbitrarily instituted an isolation rule that if anyone at home is sick, then Maggie shouldn’t be around them for 1 week from onset of symptoms or until they feel better. So since everyone at home was sick, she and I went to Grandma Baba’s when she was discharged from the hospital last week. We are very grateful for Baba’s hospitality – Baba has been living alone for TWENTY years and it must be very disruptive to have a homesick tired mommy and baby come and take over her apartment. I think we surely wore her out. We moved back home Wednesday night although are still keeping Maggie isolated in our room when the other girls are home. Here is a picture of some fun at Baba’s house before we left!

I don’t know the whole story behind this photo, but I do know that involves Laney and her “store.” I am missing my other babies and their daddy a lot this weekend – there has been at least one person sick at home for the last two weeks (in this order: Tommy then Kaya then Mila/Laney simultaneously, and now Gammy starting on Thursday). So I haven’t felt comfortable with Maggie staying at home, and we have been staying with Baba since discharge from the hospital. Thankfully, I get text messages as they do ballet, carve pumpkins, and have all sorts of other adventures.

Today I am incredibly proud of Kaya for completing the school marathon. The students are asked to run 26.2 miles over the course of a month, or roughly a mile a day on the days you can remember. Running with Kaya is one of my favorite activities, but this year it was SO HARD to find the time. I pretty much ditched her for the second half of the marathon because we ended up back in the hospital, but she finished it out, and today at school Tommy and Kaya ran the last 1.2 miles together. Go Kaya!

(PS – we are out of the hospital as of Monday night and Maggie is doing okay!)

Lots of updates in the last couple of weeks – mainly that Maggie was readmitted with a central line infection. She is now doing well after her line was removed and I am secretly enjoying snuggling with a catheter-free baby. Not so much enjoying the peripheral blood draws (ie, needle sticks) though. I am hoping she will get out of the hospital in the next couple of days. Eventually she will get a port – maybe on Friday – although I am not in too much of a hurry at the moment. Here’s a picture of her with her hand IV after they took out her line (who puts a hand IV in a one year old? It lasted about 18 hours, which is more than I thought it would).

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.