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Snowstorm tonight, last session tomorrow

posted Jan 1, 2014, 4:06 PM by FightingFor Mya

Mya had her session yesterday. The staff in Radiation have really taken a shine to Mya. They stroke her hair in Recovery as she wakes & give her lots of hugs and cuddles. It is sweet to see. They had her blood drawn to check her levels. Her ANC was at 375. That meant she was neutropenic. In the past, that would have earn her an automatic admission to the hospital. Dr. Chu was contacted. She told them that as long as Mya was going home & STAYING home, she was ok with Mya going home. The problem is that Mya's body is fighting the effects of the radiation, fighting the effects of the medications which make her tired, fighting the stomach flu (yes, she is still exhibiting symptoms with the runs), and can't ingest solid foods because she feels nauseous. She also has a nagging cough from her continuos running nose, so she barely sleeps. So her tiny little body is trying to do all of these things without the much needed benefit of healing sleep.

We are scheduled to go to Disney next Tuesday. However, Radiology would really like us to delay the trip 2 weeks to give her body time. Unknown to us when we started the sessions, Mya will hit the lowest point 1 week AFTER radiation ends. And to be honest, if she goes any lower, I don't see any way for us avoiding a hospital admission. She just doesn't gave the reserves needed to make it through. This stomach bug hit her at the worst possible time...

We might go to Boston tonight and stay over, so we will already be in the city for our morning session. They will do her last session and draw her labs to see where her levels are at. If she is still neutropenic, we won't do our IV infusion scheduled at Dana Farber. We will also follow up with Dr. Chu to see what she advises for the Disney trip.

All I really want is for her to sleep!!! I've been trying to get her to nap, but of course, she fights me on that. If we have to postpone with Make A Wish, we will. Our planes tickets are with Southwest, so there isn't a penalty for changing flights. I'm just a little frustrated with all the teams involved. Everyone said we shouldn't wait to do Disney, so we rushed to put together the trip. Now, the teams are telling us that she will need time to recover from the sessions. Just feel that the communication wasn't as clear this time. Normally, it is crystal clear. Maybe we just didn't hear that part, I honestly don't know.

Will post again to let everyone know where her levels are at and what the game plan is shaping up to be.