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.


Day +24: All Quiet

Things are fairly quiet around here. Zoe is growing cells, and we’ve swapped again so that I’m back in the hospital to get Michelle out with Maya for awhile. We had to extend her stay unexpectedly due to Maya getting a little fever, and needing to wait until that was long gone before having me come in.

Zoe is managing everything really well it seems, she is on .2 of Fentanyl at this point, very little pain that we have noted but still very tired and stomach somewhat upset. We’ve added a Zantac-like medication to help with that. She is still not nursing, still on TPN, but we’re hoping that will pick up in the near future.

Preparations have begun for discharge, which is really mind-boggling. I swear we just got here! Nevertheless it can’t be anything but a good sign that we’re preparing to move to outpatient services.

We’re in no rush, however, to get out of the hospital. The next phase is one of the most daunting in some ways, much of the “danger” associated with the Stem Cell Transplant is related to infection, graft failure and Graft Vs Host Disease.

There is a lot of “tweaking” that will take place as we monitor her graft to be sure that she has an opportunity to get her new cells established and work toward a (hopefully) 100% donor immune system. This means going on or off of certain medications to strike a balance between infection protection and doing no harm to the graft. This will be perhaps the most important phase, the one after which we might be able to feel some confidence that Zoe is “cured”.

We’re not sure yet when we’ll be discharged, but it’s looking like the end of next week, or more likely the week following. After that, it’s back to daily clinic visits here at Duke.

Step by step to the end.

ps – WBC up to 5.5, ANC up to 3905 (into normal range!). Hard to believe.

Day +22

Zoe is still in some discomfort, but she seems better today. Her cell growth has continued to be very high, she’s now up to 3.6 WBC and 2988 ANC, which is actually quite a bit higher than she was leading up to her transplant I believe, even before her final week of conditioning.

Maya has come down with some sort of summer bug, we think possibly due to something she picked up at the pool, but her fever never got very high (100/101) and it appears to be fading after about 36 hours. She is, we believe, out of range of having FHL in terms of her age. She has of course been sick several times in such a way as to trigger it were it present, including with the same virus that triggered Zoe’s.

Still, there is nothing more stressful I would say than to endure something like we have with Zoe and then turn around and fear for the same thing happening to her sister. The doctors feel confident that there is no danger, but the nature of HLH is such that it terrorizes parents who know what can happen. I can’t comprehend, even having been through what we have so far, what those families who have seen the worst of HLH endure. Particularly with siblings — knowing that the hereditary risk exists is the stuff of nightmares.

On a lighter note, one of the nurses made a little bow for Zoe today out of one of the medical materials used in her care — we thought it was cute.

Day +21: Engrafted!

It’s been a really long couple of days, when they say “the kids have some pain during engraftment” they are not kidding. We had weaned her Fentanyl down to 0.2, but after yesterday we went back up to .3 again to try and get ahead of it.

Zoe is in great spirits between her bouts of discomfort, and she’s been healing. She had little scratches from where we couldn’t cut her nails and she would swipe her nose at night, some breakdown on her little bum, and of course the mucositis in her mouth and GI tract, and all of that is clearing up rapidly now that she has white cells.

And so, we are now officially engrafted, which means Zoe has had an ANC of >500 for 3 days. I like to think she hit that target out of the park, she went from 496 on Sunday straight to 1096 on Monday, 1290 on Tuesday and now 1766 today. Her WBC count was 2.6 today, up from 1.5. Good work Zoe!

We’re glad all of her discomfort and pain has paid off. It’s been a little anti-climactic honestly, I was expecting it to be more drawn out — though I’m grateful we made it quickly.

Amazingly, we now have to start planning for discharge. We have classes to attend to learn how to be nurses at home, we need to finish weaning Zoe from her pain medications (when the pain actually subsides), and reach a comfort level with the idea of being out of hospital again.

We’ll be required to stay local to Duke for another 80 days or so, to be sure that Zoe is fully recovered before we can return home. This next phase is one of the most tenuous, we have to make sure Zoe remains clear of any infections and that she doesn’t lose her graft.

Day +20

Well we appear to be on the right track, Zoe is growing cells pretty rapidly now. Her WBC count was 1.5 today, up .2, and her ANC is now up to 1290.

The downside is that we’re having a lot of pain issues due to the cell growth. We’ve been trying to pre-emt the pain with Tylenol, but that doesn’t always work, and we’ve already weaned her Fentanyl down some since that is part of the process. We don’t want her on the narcotic any longer than absolutely necessary.

Still, it was a rough night for Michelle. I’m taking my shift outside the hospital to get rested. Hopefully this won’t continue, we’re told it can run as long as a week but we think that her “week” started days ago, so we might be almost through it.

Having a baby in pain really does make one heartsick, but the nurses keep reminding us that it’s better for her to be young, the influence on her will be minimal that way. They’re well intended, but those sentiments don’t really make us feel better.

Getting through this will, however. Almost there, we hope.