2020, just when you think it can’t get worse…

This is a post I always hoped I’d never have to write, but you don’t always get what you want out of life.
Two of the tumour sites in Alex’s brain have grown.
I’ll pause for a second so you can process that.

On the 4th of September Alex had his first MRI in 2 years. There had been a breakdown in communications between departments at the Womens and children’s hospital – Oncology had discharged us, but no one had let the neurosurgery department know that our discharge meant that they were now in charge of booking in Alex for his MRI scans – consequently no one had scheduled the 2019 MRI. We chased it up in October and it was booked in for April of 2020. Of course you all know what happened in March 2020 and all ‘non essential procedures’ were postponed. It was rebooked for May, then cancelled again and finally rebooked for September – almost exactly 2 years on from his last scan.

We were used to having the scan, waiting 4 business days and then getting a phone call with the results. When a week had passed post scan we started to get a little edgy and began calling the hospital trying to get the results. I’m sure we annoyed quite a few people in the neuro department with our repeated calls and one in person visit over the next week or two, but in the end we were given an appointment for the 30th of September.

That was when we were told that one of the lesions they were monitoring had shown growth. 2 years ago it was a blob around 6mm in length situated close to his brain stem. This scan showed it had grown to 16mm.
To say this was a shock would be an understatement. We went through the scans with Dr Elly, there wasn’t much that he could tell us other than it had grown, this wasn’t a good thing etc. He told us that the neurosurgery department would discuss it at their weekly meeting the following Tuesday and he would keep us updated.

Knowing something is wrong and having a pathway forward is horrible but do-able for me. Knowing something is wrong but having nothing but that knowledge is indescribably hard. Phil and I both struggled with this news, I processed by keeping busy – we had to let family know, and I have several projects currently in hand – shed therapy did help a little.

On the 8th of October Dr Elly called and told us they had deemed the tumour inoperable and the neurosurgery team were meeting with oncology on the 14th, then we had an appointment made to meet with our new oncologist Dr Beck on the 19th.

Amid all of this we had one wonderful thing to hold to. Alex turned 11. He had his birthday party on the 18th, a day supposed to be overcast and cloudy, but when 2pm rolled around there was nothing but blue skies and sunshine and so much joy. Watching him play with his friends on the playground and bury his face into his slice of birthday cake was priceless.

Alex eating his birthday cake

That brings us to today – the 19th. We went back to level 5, we even saw a few familiar faces, which fell as soon as we told them we weren’t back for just a checkup.

Dr Elly went first, when going over the scans again they had seen a second lesion which had changed size, this one on the right side of the brain. Both sites are considered to be inoperable – even to biopsy – the brain stem lesion is hard to get to and is situated near a nexus of nerves – even trying to get near it would carry an enormous risk of paralysing the entire left side of Alex’s body. The lesion on the right side has cuddled up to a spot where the main artery entering the brain branches out – going after that one risks a massive stroke.
This makes things more difficult for Dr Beck – with fresh tissue samples you are able to be more certain of your treatment – however there are still some samples available from the original tumour which will help somewhat.

Back in 2013 the tumour was tested and found to be a mixture of tumour types, which was what made it difficult to treat. It started as a grade I tumour – a ganglioglioma, but had changed as it grew, morphing into a grade III tumour – a PNET.
PNET tumors are aggressive and fast growing which was why Alex was given such a high dose chemo protocol. We hope what has started growing again this time is the glioma, since in the last 5 years a new gene therapy treatment has become available for this kind of tumour.
Glioma tumors have a high rate of a specific mutation (BRAFV600E if you want to google scholar it) – around 50%. If the mutation is present there are now a few drugs which can target that mutation.
They aren’t perfect, the most common side effect seems to be a several different types of skin irritation, but they are vastly better than conventional chemotherapy when it comes to the collateral damage these drugs have on the rest of the body. They are also oral medications which can be taken at home, so an infuser port and weeks in hospital having chemo are not required.

The pathway forward right now is to get Alex’s original samples tested for this mutation, this will take 6 – 8 weeks, and to schedule another MRI to give us an indication of how fast the tumors are growing.

So it’s a 50/50 chance. Toss a coin. Cross your fingers.