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!

6 thoughts on “Day +10: The Worst of It (We Hope)

  1. You all are always in my prayers, especially Zoe.
    Be strong And never loose faith.
    She’s such a strong baby 🙂

  2. Evan ~
    Even flushed and feeling yucky she is absolutley beautiful. I am so happy that things are staying on the less bumpy side so far. I was always waiting for the perverbial shoe to drop, and was told as long as it drops softly things will not be as bad. It has dropped softly 99% of the time so far. I pray every night that Zoe stays strong and that your family finds comfort and strength. Have a very happy 4th of July. I hope that the Dr is right and you get that little surprise.

    Much love,
    Shana, Kris & Maya

  3. Fever, rash, engraftment doesn’t quite roll off the tongue with the ease of grow, cells, grow, but I’ll take it. When the doctor is excited by something that makes you nervous, I see that as a VERY good sign :).

    Great news on discontinuing the antibiotic and I like that they want to keep her a little on the “dry” side by increasing the lasix – less stress on her heart/lungs.

    She is beautiful and resilient. Best to all. Love, Mara

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