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 +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.

Day +16

Everything is going well here.

Zoe had physical therapy and she’s ready to explode we think, now that she’s starting to feel better. Once she loses a bit of weight she will likely have an easier time with the developmental steps — sitting on her own, holding her feet, rolling over.

She is sitting mostly unsupported, just with a hand at her back, working on her tripod. She can roll half way over, but her little legs drag her down, keeping her from making it all the way. She is trying, however, and at this point I think that’s what we want to see. She knows what to do but the circumstances are holding her back a little.

Zoe’s WBC was 0.3 (300) today. Down slightly, but good news overall since she is holding her count. If she remains at 0.3 or above another day or two we’ll have met another milestone on the way to engraftment.

As I mentioned yesterday, we’ll be focusing on her ANC for awhile. The first goal is 500 for 3 or more days. Today her Segs were at 48 with no Bands reported, which means our ANC calculation looks like this:

(SEG +BAND) x WBC = ANC

(.48 + 0) x 300 = 144

On on!

Day + 15: All About ANC

Zoe’s WBC count was 0.4 (400) today. It’s her highest in a long time, since conditioning, and we are really excited.

Our next target, now that she’s begun to grow cells, is to reach “engraftment”. The official definition of engraftment, from what I understand, is to have an ANC of over 500 for over 3 days.

ANC means Absolute Neutrophil Count, which is a formula for calculating the immune system’s disease fighting capability. An ANC of under 500 is neutropenic, which means the body is at a significantly increased risk of infection.

For Zoe, reaching an ANC of over 500 will mean she has officially engrafted. The next step will be to determine which cells engrafted, her new cells or her old, by doing a chimera test around day +30.

To calculate her ANC we take her Segmented and Banded Neutrophil counts (which we should get on a printout tomorrow) and add them together, then multiply them by her WBC count.

So:  (%SEG + %BAND) x WBC = ANC

When that number reaches 500 or above and stays there, we are at our next milestone.

Update: I was a little off on the ANC calculation, corrected that.

Day +13

We had a visit from Dr. S yesterday afternoon, and it was very positive overall. Zoe was feeling good and smiling, and we were able to discuss her status.

Her WBC was 0.1 yesterday, but on Mondays they do a manual differential, which means that they actually look under a microscope and count the cells. The daily cbc is done by machine. So they actually saw white cells under a microscope, no possibility of machine error there. Dr. S felt that we are exactly on track for the start of cell growth, maybe a few days early — day 14 he said was typical, we were day 12.

We talked about the Reduced Intensity Conditioning study that Zoe is on, which Dr. S heads, and so far they have used this protocol with 7 other patients. Only one of them had any notable GVH, most of them had very very mild if any at all. Zoe has had a very mild bit of GVH on her cheek (the redness seen in recent photos), but he felt it was at best a 1 on the scale, so not a concern.

All 7 of the kids they have used her protocol on have had successful grafts. Very very good news. They feel that Zoe is shaping up exactly as expected, which in medicine I gather is a great thing. Wonderful news.

Zoe’s mild tissue breakdown in her mouth from mucositis is healing, as is her bum. We haven’t needed the “open air” strategy or any special medicines for it for a couple days now, just her cream.

The WBC count today was again 0.1, which means we seem to be holding steady at the moment with some cells. It will likely go up and down, what we’re hoping for initially is 0.3 or so for a few days, that will indicate some stable progress with cell growth.

Assuming things continue as expected from here, we’re looking at a nice long stretch of waiting while Zoe’s cells grow. We may see some increased redness from GVH if the cells rush in too quickly, but it’s not anticipated. Zoe may have a higher chance of that because she is the youngest on the study, and she got the most concentrated cell dose, which is a good thing in most respects. It does mean her cells may grows fast enough to generate a reaction, however. We shall see.

Zoe has been feeling well enough to start playing with the bottle again. She’s been unwilling to take it for more than a moment, we assume due mostly to mouth pain, but it’s a good sign that she’s willing to take a little now as she’s healing.