Well, we made it through Thiotepa. Michelle deserves most of the credit, she had it rough last night with baths and gowns and Zoe refusing to eat out of the bottle. We contemplated having me stay over to help, but technically we’re only supposed to do one person in the room, and with Maya in town and expecting us we thought it better to stick to the plan. Still, kudos to her for getting through what had to be a rough night.
Zoe had her last bath late morning. The baths involve wiping down her skin really thoroughly with damp gauze pads to remove traces of the chemical being exuded through her skin. I didn’t realize this yesterday when I mentioned it, but apparently leaving it on or allowing it to accumulate can cause 3rd degree burns. As such we’re very careful to clean her armpits and little baby wrinkles where moisture accumulates.
But, it’s done now. This was anticipated to be the worst day of conditioning, and it was. Zoe is a trooper though. She didn’t like the wipe-downs one bit, but as soon as they were done she would calm down and resume her normal chipper demeanor. We’re very lucky.
Today we simply continue her maintenance meds and get ready for tomorrow, Day 0, transplant day. We’re bringing Maya and my parents in to cheer her on while she gets her transplant since they’re local, so that should be a nice occasion.
A lot of nerves here, but a lot of hope too. We are tense because it’s all come down to these next couple of weeks. We’re ready, but scared for Zoe. It’s a big deal, getting a new immune system. The vast majority of people go their whole lives having no procedures so major as this, and here she is plugging along at 5 months old for it. I find it pretty amazing.
Well, as the day wore on things became a little more tense. Zoe’s pain got worse through a combination of the mucositis (from the melphalan), the soreness from blisters on her bum from Thiotepa, and probably some lingering aches from surgery on Friday. In general she had a pretty rough afternoon.
We did get a PCA device set up for her, she’s part of a study that allows parents to administer small amounts of pain medication (dosage regulated and on a timer) when they see their child needs it rather than have to wait for a nurse. It’s basically an IV that can’t be adjusted, but which will dispense a small amount of medicine when a button is pressed to stave off pain. It works wonders.
From here on until she recovers it will be a little bumpier than it has been. We made it through most of her conditioning with little impact to her in terms of discomfort, but now things start in earnest.
[spoiler name=”Day -1 Counts, for the record”]
- WBC: 0.4 (will likely be “<0.1” by transplant time)
- Hemoglobin: 10.6
- RBC: 3.67
- Platelets: 56 (she’ll get a transfusion tonight more than likely)
- Creatinine: 0.2 (good)
- Bilirubin: 0.5 (good)
- Sodium: 140 (no longer an issue)
- Lymphocytes: 4% (The way this was explained to me is, she may have a few going into transplant but they are neutralized and cannot multiply. They will slowly be knocked out in the next few days and will not be an issue.)
WE ARE AND WILL BE CHEERING FROM ACROSS TOWN!!!! GO ZOE GO!!!!! Love, m, k & a
You and Michelle are amazing parents!
Like Mara, my thoughts,prayers and positive energy have been directed at Zoe and so it will continue….. esp for tomorrow and the days to come…….
Love to you all………
I hope everything goes well, I’ve been praying for Zoe every single day. I know how hard it can be but you all are wonderful parents doing such a great job.god bless you all.
(Drake and I are friends of Larry and Sandra, and we just found your website.) Please know that all your family, and especially Zoe, are, and have been, in our prayers each night. We are praying FOR you (when you’ve run out of words to pray).
Zoe continues to be in my thoughts and prayers. She looks so peaceful in the latest picture. Isn’t it amazing how they can cope with so much more than they should ever have to? I pray that God continues to give the family the strength to meet all of Zoe’s needs.