Unrelenting dizziness has really taken Daniel down. We had to increase steroids and add various medications. Headaches are ongoing. The bouts of intense pain have seemingly been better managed with the meds for now. He rests a lot, sleep his only escape.
We are starting pediatric concurrent care, which means some home comfort assistance while still receiving standard medical treatment. The wheelchair came in, though Daniel is really not up for going anywhere. We are trying to see if Daniel can even qualify for the clinical trial. We are waiting for the National DIPG/DMG brain tumor board to revisit his case.
We pray, Lord willing, as long as Daniel is gifted us (another desire), that he may have some, at the very least waves of, relief. I was holding out hope that things could calm down a bit and he can have some rebound. We wanted to do a little more together. Don't we always?
Thank you for all you do. Though we often do not respond personally, we see you and take it all to heart.
Thank you for lifting us up in prayer while we are suffering tremendously.
We were granted a window of time in which Daniel was able to handle a photography session. Thank you, Katie Moos, for the gift to treasure.
