The Friday before Christmas I was up at our local shops doing our grocery shopping when I got a phone call.
Dr Beck, Alex’s oncologist, was calling to ask if Alex was able to take tablets or if he needed them crushed and put into a suspension.
Why did she need to know this?
The internal pathology results had come back, and Alex’s tumour was positive for the BRAF mutation.

She was in a little bit of a rush as the paperwork had to go in that day – you have to apply to the drug companies to be allowed to prescribe these particular drugs (either Vemurafenib, Dabrafenib or Trametinib or some combination thereof) and that Friday was their last day before closing for the Christmas break. Since the process takes about a month Dr Beck wanted to get the ball rolling.

We had resigned ourselves to not having the results before Christmas so this phone call was a bit of a surprise to say the least. Fortunately I had ducked into a side corridor at the shops to take the call and the lovely Carly from Bruce’s meats was passing by and stopped to check I was OK, so I had someone to hug and share the good news with (and cry on – sorry about the apron Carly!).

We had a wonderful Christmas and new year, enjoying the time at home together. Alex has done a LOT of lego and both he and Jenny have learned to tie their shoelaces!

 

Then on Thursday the 21st of January, less than a week before school goes back, I get a phone call. Alex’s Oncologist wanted an MRI to be done in January, there had been a bit of a mix up with paperwork and now the only slot left in the month was an 11am presentation to DOSA…. on the 27th of January.
The first day of school.
Alex has a habit of having medical crises on significant dates. It appears now that he’s syncing up his MRI’s with significant school dates. Sigh.

So it’s not off to school we go on Wednesday, it’s off to DOSA instead. The following day is also not off to school, at least not straight away, as we have a scheduled appointment with the Neurology department at 9am. We are also off to Cardiology at 10am as we were informed on the 25th that Oncology wanted Alex to have an ECG.

Why? No idea.

Hopefully we will find out on the 1st when we have another appointment, this time with Oncology. Do we know how to start a school year off or what!

With a bit of luck the MRI results will be available on the 1st for our Oncology appointment and we will find out what our next steps are.

Oh and Mum reminded me we know the word red in Welsh – coch – lets see if Dr Nick can beat that one!