Simon had his CT scan on January 11th.
It’s the first time he’s done it without screaming! He did great.
MIBG scan on January 12th
It’s the 2nd time he’s done it without sedation and he did great.
Bone Marrow ASpiration on January 13th.
He did NOT like being put under. But he woke up so happy.
All have come back as clear, no evidence of disease!!
Let’s continue with some good news – if all goes as planned, with no setbacks – we have a last day of treatment! June 3rd. It’s going to be a rough road the next few months but we’ll make it, like we always do 
💪
Now the rough news: Part of this treatment for the next few months is a shot almost every day. It can be given at home with one specific home health company. We got this company approved on our insurance. HOWEVER the home health company will not take our insurance. We have a coordinator with our insurance who is amazing so she’s still begging them to make it work.
Treatment starts this Friday, the 19th. We will need to go to the hospital for the shots in the meantime while we wait, and pray, for approval.
These shots are to prepare before , help during, and after the antibody.
3 days before, 5 days during, and 6 days after.
The 5 days during – we’ll be inpatient. That starts on Monday. Back to the hospital for 5 days /4 nights we go!
