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 +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.