Ava slept most of the day yesterday, not sure why. But she managed to still sleep at night (some of her meds probably helped). As far as I understand, she hasn't had any fever or anything, but I'm not exactly sure how Ava's been doing today. I don't know how her itching has been, either, but I'll update as I hear more.
They did detect some CMV (cytomegalovirus), so she will receive meds for that. CMV can be hard on immunocompromised patients, so we appreciate your prayers for the CMV to be under control. Similar to the HSV virus that causes cold sores or Ava's herpeticum, CMV is a virus that stays dormant in your body until something triggers it to become active, and there's no cure for it. Antivirals can slow the reproduction of the virus, but can't eliminate it. Thank you for praying that Ava will not experience any further symptoms or complications as a result.
Some additional prayer requests:
- Gwen - some recent blood work revealed that Gwen also has hyperelevated IgE levels. You may recall that before transplant, Ava received a drug (Xolair) to decrease her IgE levels in hopes of minimizing any hypersensitivity or allergic reactions. Xolair is only approved in patients with IgE levels of less than 1,000. Ava had an IgE level measuring at 22,000 prior to that, but somehow dropped to 800 pre-transplant, so decided to try Xolair on her then. Gwen's IgE level came back as 20,000 --- very similar to Ava's super-high levels. So they want to do some further testing on Gwen, including some genetic testing to look for any genetic mutations that may affect her presently or in the future. They can't say whether or not there's a link to the girls' allergies and leukemia, but they want to investigate and find out more given Gwen's allergies as well. Please pray for this whole process and how/when it will take place. It's hard to think about putting another child through more stuff, but of course everyone's just as concerned about Gwen's health.
- Insurance - please pray for smooth and accurate transitions to changes in insurance and smooth reconciliation of billing/coverage, etc.
We just want to reiterate how valuable your friendship and support have been! We pray for God's blessings of joy and peace upon you and your loved ones. Please know that Mike & Esther would still love to hear how you are doing, (but please forgive them if they aren't able to respond right away). Thank you!