Day +7: A Hint of Good News

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.

Interesting.

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.

Day +6

We’re still here!

Zoe’s mucositis has improved somewhat, earlier than expected, but we’re not out of the woods yet. Days +5 to +10 are supposed to be the worst, the doctor on this week has said he expects it to peak on Thursday, but so far Days 3 and 4 have been the worst for us.

Since Zoe has stopped nursing more than sporadically, she’s had a little easier time of it. We’re trying to have the best of both worlds by nursing her a little for the benefits that offers, while not so much that she has increased mucus build up.

Very little else has changed. Zoe’s diaper rash is back with a vengeance, but we expected that. She has had tons of chemo but has no white cells to heal the breakdown, so it will linger for awhile.┬áHer counts remain where they were, and they are unlikely to change significantly until after Day +10.

In the meantime, it’s a matter of keeping her in the best possible spirits and manage her pain and comfort, which we’re getting better at we feel.

Zoe’s WBC count has remained at “<0.1” for days now, which is somehow better than “0.0”. Now we wait for “0.2” or higher.

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.

Day +3

Zoe is sleeping a lot right now, and not a lot has changed in the past couple of days. She is receiving Fentanyl for pain, and Narcan to mitigate the side effects of the pain medication, which for her has been itchiness.

She’s not very interested in eating at the moment, she’s on IV nutrition as I’ve mentioned, so we’re going to try a night with Michelle out of the hospital and see how that goes. She’s been staying here to nurse, but as we start a period of time where that’s not going to be as practical, we might as well get her a break.

In general we’re in wait and see mode. We expect things to get a little more tense in coming days as (we hope) cells start to engraft, but until then quiet is a good thing.

[spoiler name=”Click for counts”]

  • WBC: 0.0
  • Creatinine: 0.1
  • Hemoglobin: 8.3
  • RBC: 2.83
  • Platelets: 69 (post-transfusion)

[/spoiler]

Day +2: Under the Chestnut Tree

We had another of those unexpected moments yesterday. Throughout this ordeal I’ve been amazed at how the most touching remarks and moments seem to come when we’re least expecting them.

As with any hospital room, we get visits from various staff throughout the day, including cleaning staff. Yesterday, one of the staff came in and was going about his business. He’s always very pleasant, asking how we’re doing and how Zoe is, but if he doesn’t get much of a reply he finishes up in silence and moves on.

I’m not sure what it was that made him stop though this time, perhaps it was that Zoe was more awake. When he asked how she was doing, I replied offhand that she had just had her transplant, but also seemed quite interested in him. She had been following his movements around the room as he wiped everything down.

He paused, turned toward her and smiled, and started talking with her, continuing to work as he did but facing her as much as possible now. At first it was just baby chat, but she just continued to look at him for that, no response. Then he stopped, clasped his hands together on the bed rail and looked at me. “Sometimes a little poem is the thing,” he said, then turned back to Zoe.

He began reciting a poem, putting Zoe’s name in as he did in place of whatever name was there originally. For the life of me I wish I could put it down here from memory, but I was caught so off guard I simply listened. It was about a baby underneath a chestnut tree, and rhyming with Zoe and Me, it worked really well. Zoe for her part was rapt in her attention to him, smiling at parts of it, clearly amused.

I’ve been searching for the poem online, thinking at first he had memorized it, but I can’t find it. Could be that he wrote it himself, I plan to ask the next time we see him. I definitely want to hear it again, perhaps write it down for her. It was really sweet.

After he recited his poem, he asked again how we were doing. More relaxed this time, I told him it was hard some days, but we felt good about where we are and how Zoe is doing so far.

He told me about another parent he met on the ward one time, who was having a rough time with her child. The child was a teenager and as complicated a relationship as that is in and of itself at that age, being sick made it more so, and she had begun to take it out on the mother. One day, he said, he asked if he could talk to her for a moment while he was working on their room. The mother was outside in the hall already and said that would be fine.

He spoke to the teenage girl as he worked each day for a few days. The first day she didn’t want to talk. The second day, they talked a bit, and he was able to encourage her to open up about how things were going for her. By the third day, he’d somehow broken through her need to close off enough that she apologized to her mother for being so hard on her, and they were finally able to talk about things, the mother told him later.

After the poem and this story, I was beginning to feel that we were in an episode of that old TV show, Highway to Heaven, where an angel would step into people’s lives and try to help them. I’m sure this sounds odd, but somehow it wasn’t uncomfortable at all. He really seemed to want to connect with people any way he could.

Apparently, he also teaches ballroom dance classes to transplant parents in vacant hospital rooms when they are interested, to try and give them a break from the hospital monotony.

I am not making this up.

Anyway, Zoe has had a decent enough day after a bit of a rough start this morning. She’s been spitting up most everything she eats, the Mucositis is giving her fits with her belly. We’re trying to find the right balance of nursing with the IV nutrition that she’s getting so as to keep her comfort feeding yet avoid spit ups, but we’re not quite there yet.

Still, everyone feels Zoe is doing great. Her color is good, and she was smiling and playing for the docs and nurse practitioner today. Her RBC count has dipped as expected, so she will likely get a transfusion of red cells tonight. She got her platelets this afternoon when her platelet count dropped to 13.

All in all she has been right on track with what everyone expects. If anything they feel her spirits are quite high for what she’s going through.