I spoke with Haven's doctor tonight (Dr. Paz). They have finally been able to schedule her mIBG testing. This will be done the 23rd - 25th.
Now surgery will be scheduled the following week of January 28th. After we do the MRI on Thursday the surgeon and doctor will call. They want to make sure they will not need any other surgeon specialists. As the doctor said, and he's only saying it not confirming it, but if the tumor has made it's way to the brain they will need a neurosurgeon as well.
I will also be receiving a phone call from the Pulmonary doctors to set up Haven's sleep study. I informed them that I didn't want this to delay surgery - sleep is last on my list of priorities. But they believe it's very important to analyze her Hypothalamus functions.
Her doctor met with a lot of doctors (via phone/video conference) yesterday to review Haven's case. All of them have worked with Neuroblastoma but none of them have had a case like Haven's. Doctor again told me how rare her case is and he hasn't found someone who has worked with a case of this cancer causing all the other diseases. My guess is it's another way for Haven to be the only one doing or having something.....she likes to be in a class of her own! :)
Anyway, that's what I have so far or I'm forgetting something. I have to write everything down to remember it.
Love you all