ROHHAD / Neuroblastoma Treatments

Here is an update on Miss Haven – it’s good with the bad

Cortisol levels are great. Haven is producing Cortisol on her own which is AWESOME! We were a little worried about this but maybe this means we won’t need to do growth hormone shots in 09! It’s always a plus when Haven has good news. We hope to see her start growing now.

Bad news: Haven’s body wasn’t handling the new chemo very well. She had her levels checked today and I received an email from her doctor that they were way too high. So we were instructed to skip tonight’s dose of chemo and to only do half the dose tomorrow. She will go back to the doctor at 8 am on Friday to get her levels rechecked. We hope they level out or she may have to switch chemo treatments already.

I have been asking the doctors about her symptoms but I still have not gotten an answer on that. Since starting this new chemo last Wednesday she has not slept for more than 4 hours in a night. Her gums are always sore and I have been loading her up with bubble gum flavored Ambesol. She has been peeing like crazy and she is achy all over. We were a bit concerned this afternoon. Haven fell asleep around noon and could not wake up. Kris tried waking her up many times and she just couldn’t do it. He finally got her to get up around 5pm but Haven sleeping like that is very unusual. I was sure we’d be at the hospital but she seemed fine while I was home.

I’ll update again after her levels.

Kris did take some video yesterday of her sleeping – I guess it was pretty crazy. I haven’t looked at the videos yet but I’ll post them up.