in General


We met with the radiologist today to get the next part of Ezra’s treatment scheduled.

Radiation should be starting at 42 days after transplant – which is today. So we’re going in tomorrow to get him measured and start the radiation. It’s very precise positioning – it is multiple direct rays which hit specific areas in Ezra’s body (where the tumor was removed). Since the tumor was so close to the spine, Ezra will have to get anesthesia for every treatment of radiation. Oh – and it’ll be twenty sessions. Which start at 7am, Monday – Friday. So a month from now we should be finished with radiation. And i was jussssst starting to get into being home…

Because he needs anesthesia each time, the appointments will be longer than for an adult. Adults go in, sit down, and head out to work after. Its extremely important the patient is super still, so kids wind up having 4 hour appointments instead – get anesthesia, get radiation, spend an hour or two waking up from it.

He normally wakes up at 930 or 10am, so he’ll be a bit whiny during the day from the lack of sleep – hopefully the sedation will give him some rest. He cant have breakfast until after every appointment, since you cant eat before getting anasthesia.

Waking up at 530 for the next month!

After the radiation, the drs wait 2-4 weeks then do scans, and THOSE scans will determine if he’s announced in remission or not. We’re hoping that will be before Ezra’s birthday on August 31st – which may or may not happen. It won’t be long after if not though. The next step would be 3F8, a new(er) treatment called a monoclonal antibody which will significantly lessen his chance of relapse. We’re not sure on the treatment schedule on that, but it looks like 6 treatments which are a few days each. That will be the last of his major treatment.

Charley is doing awesome – rocking along, needing less and less oxygen, and weighs 8 pounds 12 oz now!!!! Everything is looking good now so he’ll prob be home in the next 4-6 weeks. Gonna have two kids home soon!

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