Day +37: All By Herself!

Another milestone this morning. Zoe’s counts all went up today for the first time without any cell growth medication or transfusions. Her WBC went from 4.1 to 4.8, RBC was up, and platelets are finally stabilizing and going up on their own.

For quite some time, Zoe has been getting platelet transfusions to keep them up, though she hasn’t gotten one in about a week — they have continued to slowly drop. Her WBC count has also continued to drop on any day she has not gotten GCSF to promote growth, but as mentioned that also promotes bone pain and discomfort. She’s finally growing cells all by herself!

Our departure from the hospital continues to be postponed, mostly because of the continued spit-ups. They had hoped that would be over by now, and while no one is concerned, they say it just takes more time for some kids, they prefer to have her heal a little more before we leave and she’s off monitors completely.

[spoiler name=”Click for counts”]

  • WBC: 4.9 (up from 4.1)
  • Hemoglobin: 9.2 (up from 8.9)
  • Platelets: 144 (up from 112)

[/spoiler]

Day +34

Still in the hospital, it’s looking more and more like we’ll be here ’til next week.

Zoe continues to have some discomfort, her cell growth has been through the roof on any days that we get growth factor. She went up to 23.8 WBC today, with lots of bands this time. She drifts down about 4 per day in her count it seems typically, 11 to 7 to 3 for example, then she gets growth factor and shoots back up. Those days are difficult, but getting better. 23 is our highest yet though, her ANC yesterday was 21,182.

We’ve been getting day passes, but she came back in with a sniffle yesterday and the doctors recommended we skip it today, so we are playing it safe. Her weight has also been up a little, but she’s also been nursing a little, so we’re not sure if that’s the reason for the gain.

Regardless, we’ll be keeping her in for a few more days until everyone feels like the risk of fluid retention is gone, and she no longer needs any pain medication beyond Tylenol.

Generally things are looking up. We’re roughly on schedule here, she’s engrafted, and with a good chimera result we’re just trying to work through the last remnants of mucositis and the pain of cell growth.

Michelle and I are truly exhausted, I think we’ve been running on adrenaline for quite some time now. With the most recent test results there is a bit of tension release going on, and with it fatigue as things catch up with us. Whenever we do get discharged, here’s hoping we can find a way to just sleep for a few days.

Still, the likelihood that we’ll all be back together is growing each day, so we’ll just keep focused on that sunny tomorrow until we’re out of here.

Day +27: 11.1

Zoe’s WBC counts were at 11.1 today, which is significant for two reasons. One, she has white cells! Reason enough to cheer around here. And two, she is off of her cell growth medication, also known as GCF, and her count is holding steady. She was at 11.8 yesterday, her highest so far.

It will likely go down tomorrow now that she is off completely, but we’re optimistic it might not. Without the stimulation of the growth factor (nurses here call it miracle grow for babies), it may drop by as much as half. Still, we went one day without a drop, so that’s good news.

Zoe is still having regular spit-ups as she processes out the mucus, but the pain appears to be mostly in the past for now. We expect to be taken off of the PCA that controls her pain with the button press any time, and they are trying to move us toward oral meds slowly in anticipation of discharge.

The music therapist and physical therapist both stopped by today, and Zoe did great. She is getting much stronger and closer to being able to sit up on her own in the tripod position, though she is still somewhat unstable, having to spend so much time on her back by necessity. That she is trying is reassuring, as are her attempts to roll over, often thwarted by the tether of tubes dangling from her chest.

I suspect the music therapist cheered me up more than Zoe. He did rousing renditions of Happy and You Know It, Itsy Bitsy, You are My Sunshine and one I really loved but had never heard, called Baby Beluga. Zoe was having a round of coughs and spit, so she was less enthusiastic. Still, by the end she was smiling and waving her hands a bit. Certainly a nice diversion, and I’m grateful they have this sort of thing.

Wandering minstrels with lamb chop sideburns who wear Velvet Underground and Bjork buttons while singing Raffi and classic lullabies are more scarce than they should be, I say.

httpv://www.youtube.com/watch?v=2×6-dsqhGJY

On a more somber note, one of the kids had to go to the PICU, or Pediatric Intensive Care Unit, last night. She had her transplant a year ago, but was back here for care due to a brain tumor and surgery. It’s been a harsh reminder that things can take a bad turn with such complicated diseases as the kids here are fighting. Hopefully she will be back up here soon and back on track to recovery.

Day +19: GOOOAAAL!

GOOOOAAAAAL

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.