Day +43: Home Sweet Home (Away From Home)

Maya ready for the big day

We’re out! What a day. Maya and I arrived at the hospital this morning around 10 to help pack up and do some celebratory dancing while we waited for Zoe’s meds to finish. She’ll continue to be on various medications for awhile, and TPN (IV nutrition) for a few weeks until she’s eating normally again.

Zoe knows something is up

Zoe knows something is up

Our unit is still largely on isolation due to the summer cold that went around. Though most of the kids and parents were negative, we’re kept on isolation for the duration of our stay just to be safe. This meant that our confetti parade was  almost all nurses, with a few parents and kids watching through their blinds.

It was a really nice moment, though. We’re incredibly grateful for everything Duke and WFU have done for us. Zoe had what can only be considered a successful and relatively easy stay, considering her procedure, and I have to believe that Duke’s transplant expertise and care contributed heavily to that success.

From here on we’ll be outpatient, with clinic visits daily for awhile. We’ll be managing all of the things that the hospital managed while staying there, only now it’s split — med administration, blood draws and dressing changes happen at “home”, tests and checkups happen at the clinic.

I’ll go into more detail about everything once we understand it all, honestly it’s a little overwhelming.

For now, we’re going to get some sleep and enjoy being together again.


Day +28: 7.3

Counts are holding up still despite the cessation of the growth factor, her WBC was 7.3 today. Down from 11.1, but not nearly as much as we were told would be likely. We’re encouraged.

Things are a little tense at the moment in general, nerves frayed. Michelle has been out of the hospital a few days now, and though we’d hoped to get her back in before the weekend, she’s had a cold so we can’t chance it. We think she picked up the cold on the unit actually, someone came onto 5200 with a cold and now most of the unit (13/15 beds) is on isolation, meaning no activities, no leaving the rooms except to leave the unit.

It’s a very isolated place already, so being on drop isolation raises the tension for everyone. Nurses have more duties as they have to deliver bedding, towels — anything we need really since we can’t leave — as well as wear new gowns and masks for each room they enter.

Zoe has not shown many signs of having the virus yet, but she has been sneezing here and there so we’re concerned. We’ll have the rush results back this afternoon, but will not be able to rule out an infection until next week at least. The nurses call it Paraflu, and relate it to the common cold, since that’s how it affects adults for the most part. It can be much worse for immuno-compromised kids of course, which means pretty much everyone here. They take any infection very seriously.

Still, the doctors feel this will not slow her discharge, even if she ends up getting a little worse, so long as it’s not in the chest. The way it was put to me was, she will need to begin handling her normal childhood colds and infections soon, and as long as it is not serious she should be ok after it runs it’s course. Nevertheless, it’s scary.

For my part I’ve been wearing a mask whenever interacting with her for the past 24hrs just to be sure I don’t give her anything, since until today I’ve been roaming the unit doing my own housekeeping and that’s how Michelle picked it up.

So, between isolation here and no relief with Michelle sick, everyone is edgier than we otherwise would be. We’re nervous about discharge, we want Zoe to be in perfect health for that and that is looking iffy. We’re nervous about being on our own managing meds again, and we’re waiting for the other shoe to drop each day. Things have gone really well for Zoe so far, her painful episodes were all expected and “routine”, so we are anxious that something could happen at any time.

Zoe though…well she is a perfect baby. Everyone believes that of their own baby of course, but it still needs to be said. She has little coughing fits, spits out green or yellow goo, then goes back to playing. It’s astounding. She doesn’t cry unless in pain, is patient and calm, and sleeps really well. I don’t know what we did to deserve her.


Day +25

Zoe’s WBC count hit 6.8 this morning, up 1.3 from yesterday. Just amazing. No ANC yet, we aren’t getting daily differentials right now that she has entered normal cell range. I have been waiting for it to go down some, we’ve been warned repeatedly that it tends to go up and down, but so far she’s just building.

At the moment Zoe’s only real symptoms/side effects are the continuing mucus discharge (spitting up as she heals), pain twice a day when receiving the cell growth factor medication, and some pain around her bum breakdowns. All in all, we’re making progress in that she’s not having as much daily bone pain, nor does she have any more sores in her mouth.

As mentioned yesterday, there is a possibility we’ll be discharged in the near future. I’ve been asking around a bit about that, and it seems they look for good progress on counts — engraftment, no infections, and for the parents to be “ready” to handle the care.

When we first were in discussions to get Zoe into Duke and planning her transplant, one of the things that came up was that the fastest anyone had ever been discharged from the Pediatric Blood and Marrow Transplant wing is +23 days. At that time, being the guy I am, I thought, “Zoe can beat that!”.

Now, I have no interest in that. All I care about is making sure she is at optimum health before we’re released, and that we all know exactly how to handle things. The next few months will be stressful while we wait to make sure her graft holds and she is clear of GVHD.

On Monday they will do her Chimera test, which is a method of determining what percentage of cells are her old immune system, and what percentage are the new. We want to see mostly new cells. I have been cautioned that patients can get by with far fewer than 100%, as little as 20% donor cells, and live normally, but again we are hopeful for something north of 50% for this first test, the closer to 100% the better. We’ll get results back on that later in the week, it will be a big news day when we know.