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.
Clearly Zoe is a soccer fan. We had a very bumpy day yesterday, the kids have a lot of bone pain while growing cells, but this was really something else. It was probably the worst pain she’s actually had to endure without much pain medication, since the Fentanyl doesn’t help as much with bone pain. Tylenol does, but it takes a while to take effect.
We’ve started pre-medicating Zoe with Tylenol in advance of the GCF (cell growth medication), because that is what seems to be causing the major bone pain. Things have been better since we started doing that.
She did great though. Her White Blood Cell count went up to 1.3 today, nearly triple what it was yesterday, and her ANC hit 1079. Fantastic news! I don’t know if she’s responding really well to the cell growth medication, or if there is another explanation, but she is off to the races.
Our next steps are to keep above 500 for two more days to be considered officially “engrafted”. That seems pretty likely at this point, but we’ll still have to wait and see. After that Zoe will continue to grow cells this week and in a week or two we’ll do a chimera test to find out which cells are growing, her old cells or the new cells.
Big sighs of relief around here.
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
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.
Today’s been a great day.
Maya and Michelle made it into 5200 to visit and so that we can start to socialize a bit more with everyone. There are events most days — art, music, movement, meals — but so far we haven’t really been too engaged with them. It’s been a little too tense between the transplant and the mucositis, just a little more than we could manage.
Now though, we’re going to be trying to get Maya in as often as we can now that our routine is in place. Today was Music Therapy and Arts for Life, and it was a big hit. Maya and I sat in and did maracas and tambourine, and later Zoe came in to see what all the commotion was about. It was really nice to see her out of her room and interested in what was going on. We’ve been a little trapped in the hospital room until now.
The good news though, or potential good news, is that our WBC ticked up to 0.2 today. It could be a fluke, we don’t know yet. Dr. S was in and said that it was not impossible that she is beginning to grow cells already, but it could very well be too early.
The way he put it was, if it were +4 days or if she were older, he would dismiss it as a fluke. Because she’s so young though, and because we’re at +7, it’s possible. Zoe’s bum appears to have healed a little bit, at least, he thought so, and that simply would not have happened without some white cells. Normally we would not really even hope to see growth before 2-3 weeks had passed.
So, tomorrow we will see what the counts are. If we’re at 0.2 again, then we will be ecstatic. If we’re at 0.1 or “<0.1”, well, then we’ll be where we expected to be right now. It sure would be nice if she started to grow cells already though.