A quick update

Thursday the 29th of October was MRI day. Thursday the 29th of October was also SASVI school photo day. We weren’t due in DOSA (Day Of Surgery Admission) until 11am so Alex went to school as usual, and once I had dropped Jenny to school, I followed him. SASVI were amazing and had reorganised the photo schedule so that Alex’s class went first.

After an hour of school we were off to WCH. Alex was first on the afternoon list and went in at 1pm. 90 minutes later I witnessed Alex’s most chilled out wake up EVER! Also, courtesy of the Dexamethasone, I had zero trouble getting him to eat and drink so that we could leave after the requisite 1 hour wait post anaesthesia.
The Dexamethasone has Alex eating like it is going out of fashion, it’s not all bad – we’ve been able to get him to eat things like broccoli – but he’s starting to get little chubby cheeks and a little pot belly! Having a little padding is a good thing, we don’t know what treatment is in his future or the effect it will have on him, but loss of appetite is a common side effect.
We are slowly decreasing the dosage of Dex, so hopefully his appetite should slowly come back under control, and he should transition back to cortisol at the start of December. We have also had to pause Alex’s growth hormone treatments, though hopefully only until we have a treatment plan in place.

Dr Beck called on Tuesday to give us the MRI results, after a 6 week interval there was no significant change to the lesions. This is tentatively good news – the tumors aren’t growing super fast – but 6 weeks isn’t a huge gap between scans so it’s not a complete indicator of their growth speed. Also the MRI wasn’t as clear as the one from September, the right hand side lesion wasn’t as visible – the shadow from the cochlear magnet blots out part of the image. So Dr Beck is going to have a chat with the MRI technicians to see if there’s any settings they can tweak, and to see if positioning Alex differently on the scanning bed will make a difference, and we will go for another scan in January.

While Alex was under anaesthesia he had a blood sample taken for a study being run out of Monash University in Melbourne:

The AIM BRAIN Project

The blood sample, along with the original tumor samples have been sent to Monash in the hopes they can identify the specific tumor type, with results expected in 6 – 8 weeks. 8 weeks is the 24th of December, so we are working on the assumption that we will hear from them in the new year.

Until these results come back there’s really not much anyone can do, so we are going to go on as normal and enjoy life while trying to keep up with Alex’s appetite!