30 Days of Light

We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she hasn’t had any growth medication since that last time.

The biggest improvement overall has come in the form of a medication, one that we wished we had started months ago, called Reglan. It’s a bowel treatment medication that suppresses spit-ups and speeds along digestion. Zoe has had the worst time transitioning to solid foods while still healing from her chemotherapy, and as a result we’ve really struggled with her ability to keep food down.

Since the introduction of Reglan, however, she has had almost no major incidents and has gained some weight and is growing consistently. She began this medication after we pushed for a solution to her bowel issues, which is why I mention it. I’m not sure it’s standard treatment in these cases, but the results we’ve seen have been fantastic. I know I sound like a commercial, but this was a really big leap forward for us and I want to mention it in case others have this issue.

We have finally left Durham, and the girls and Michelle are currently staying in Asheville with family while some work is done on our house. I’m back home for the moment trying to make sure things move along with the renovations — we had to have some things done to our older home before Zoe could safely return.

It’s been a huge relief to leave Durham, we had really begun to feel we’d forgotten what it was like to be anywhere else. We are grateful for the “clean” apartments set up by the Evanosky Foundation for the use of transplant families, but as nice as they were, they weren’t home. Another couple weeks and we hope to all be in one place again.

Zoe is progressing well developmentally. She’s not crawling yet, and¬†we’re¬†beginning to think she may just skip it. My mother tells me I did at her age, so who knows. Zoe is able to stand when held or against something supporting her for decent amounts of time now, but she is also rocking on her hips a lot and scootching around. We’ll see soon what path she decides to take.

All in all, things are progressing well. With the continuing construction on our house and the lateness of the year though, it’s quickly becoming clear that by the time we’re all back together and healthy, this entire year can be written off to getting Zoe through this. It’s better than the alternative of course, but it’s still hard to believe the year is almost over and we’re just now on our way home. If it weren’t for writing it all down, I’m not sure I could tell you exactly what all happened, it’s been such a blur.

PS – Please excuse the horror movie reference in the title, but it is Halloween, after all.

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 +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.

httpv://www.youtube.com/watch?v=s9sh9wkFHpE

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.