Day +11: Happy Fourth!

Zoe is doing well today, much improved from yesterday I would say. She is sleeping the day away, and that’s probably for the best. Whenever she is awake she has a hard time getting comfortable, and she has a hard time being held for very long, so it’s not easy to console her.

No uptick in her WBC counts today, sad to say. Everyone here is confident she’s begun engraftment, however. She’s still flushing regularly, skin very warm to the touch at times, and her temperature is staying around 99.5.

We did up her pain medication late last night after having a hard time getting her settled. She is set up on a PCA machine to automatically dose the medication, with “bumps” of it for rough patches if needed via a button. Zoe doesn’t react well to the button, however, she gets very itchy at the sudden higher dosage, then it fades and she is in pain again, so we tend to increase the drip instead. It’s a smaller amount than the button, but it keeps her more at ease when it’s consistent.

Still Cheeky

Zoe’s creatinine came back 0.1, which is suspiciously low given yesterday’s 0.6. Dr. S felt it unlikely that’s accurate, but it does seem likely that it has gone down not up, so we’re ok there. She continues to respond really well to the Lasix, so her weight is stable.

Which is all a long way of saying we’re holding steady. All is well, she’s doing what she’s supposed to — growing a new immune system.

Have a great holiday!

Day +10: The Worst of It (We Hope)

Things are a little tense here at the moment, we’re trying to get through what we hope is the worst of the entire process. We’ve been told for awhile now that around Day +10 we’d see the worst of the mucositis, the worst of the post-chemo struggle, the worst of the fluid retention. That seems to be where we are now.

Zoe's Lounger

Doctors are still feeling very positive about Zoe’s progress. She’s handled everything really well, and her mucositis has not been as bad as it could be by any stretch. She doesn’t have any sores in her mouth right now, just redness and irritation.

She is definitely uncomfortable though. Her pain medication (Fentanyl) has been upped a little more to help her get through this phase, and that has helped with both her blood pressure and her comfort.

The primary concern at this point is the fluid retention. Zoe is noticeably puffier, and we’re trying to let her spend as much time as we can in an upright position to make sure fluid drains well and she can breath without supplemental oxygen. Her oxygen saturation levels are still good, so we are keeping fingers crossed she’s not going to need a tube.

Zoe’s Creatinine, which is a marker for kidney function, has gone up to 0.6, which is significantly up from the 0.2 or 0.3 where it’s been stable these last weeks. We are assuming that that is because of the Lasix she is getting for fluid retention, but we haven’t heard confirmation of that just yet. There are other options for fluid retention that are less hard on the kidney, so we may see a switch to one of those today. We’ll know more later on, we tend to see the docs around 4-5pm most days.

If this is the worst of it, and it is the worst so far at least, then we will be relieved. If on the other hand things continue to get worse as they have these last few days, then we’ll be more nervous. I know from reading the stories of other families that getting through this period is really hard but that it does end, so we’ll just try and keep our eyes on that end of the tunnel.

Almost there.

Update: Feeling a little calmer after a visit from Dr. S. He was excited when he saw her, where I have been very nervous. Turns out he feels that her current condition is the beginning of engraftment — fluid retention, pink-ish flush on the skin. This is a very good thing if he’s correct, and I trust he is. He was not concerned with anything, he felt Zoe doing well since she does not need oxygen at the moment and is flushing out the fluids well so far.

Flushed & Feeling Yucky

Fever rash engraftment, fever rash engraftment — say it as fast as you can, try to keep that in mind”, he said.

We’re likely to see fevers, which can be quite severe, and skin rashes which usually start on the hands if she has them. The rashes are signs of GVH, or graft vs host, and are expected to some extent. There are multiple variations of GVH, most of them mild.

So. We’re upping her Lasix to 3x a day to keep ahead of the fluid build up, we don’t want to “fall behind” on that I’m told. We have canceled her antibiotic, however, since her line cultures are all negative and that medication is contributing to her higher creatinine.

The nurse coordinator who brought us in and took us step by step through the first stages of this stopped by yesterday, it was good to see her. She’s been following Zoe’s numbers each morning, and she was very encouraging.

As she started to leave after we had spoken for awhile, she turned and, smiling, said, “Don’t hold me to it, but I think you might get a little July 4th present. I think we might see a tick up in Zoe’s WBC count.”

Let’s hope she’s right!

Day +4: Mucositis

We’re fully into the Mucositis now, and while it’s painful to watch Zoe struggle with it, it is part of the process.

What’s happening is that the chemotherapy has eliminated her white cells (which heal her) and caused much of the fast-growing tissues to break down with sores. That means her mouth, stomach, and digestive tract is raw, and where she can she is producing mucus as the body tries to deal with the sores without white cells to heal them.

It’s rough on her, but she’s doing as well as could be hoped we believe. Her spirits are mostly ok, she isn’t very playful or smiley at the moment for obvious reasons, but she isn’t in obvious pain most of the time either. We’re just trying to keep her comfortable.

Zoe has put on a bit more weight from all of the fluids, including a blood and platelet transfusion last night, so she was given her first dose of Lasix this morning very early. She apparently, erm, released a great deal of her trapped fluids from that in the very early morning. She lost more fluid than she put on for the first day in several, so the lasix did it’s job.

We seem to have settled into a rhythm for this phase of things. Zoe wakes up in the morning, has a lot of mucus to get rid of and has to do that, then after a bit settles down. Around mid-day she is in better spirits, even has a smile here and there and lets me play with her a bit. She goes in and out of this mood as the day goes on, with occasional bouts of pain and mucus, which finally settles out around 2 or 3 am when she gets to a decent sleep.

This will continue until we begin to see white cells, which will immediately begin to heal the mucositis.

On a programming note, I’ll be trying to post a picture most days for the purpose of documenting Zoe’s progress through this, but there may be days when they are a little less than flattering. From where I sit though, it’s hard to catch her not looking cute.