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  • Writer's pictureAmy

The Rest of the Beginning

Updated: Dec 19, 2019

Following the initial diagnosis, we spent most of the next three weeks setting ourselves up for Rory's brain surgery. The surgeons and oncologists were quite sure that his tumour was something called a pilocytic astrocytoma (a benign tumour), so time wasn't too much of a concern - the main thing was assembling as extensive a team as possible and making sure the relevant technology was available to monitor his brain during the operation. We met the Consultant Neurosurgeon and Consultant Anaesthetist who would be in charge on the day, the third and fourth people in a row to talk us through all the potential risks and side effects before we signed on the terrifying dotted line. (My God, these people are incredible.)

What could have been an agonising wait actually flew by and Friday 8th November arrived too fast. The three of us took a selfie at home with forced, terrified smiles (OK so maybe Rory wasn't faking) and we headed off to the hospital at 6:30am. We kissed Rory goodbye in the anaesthetic room and then headed off without him to do...what? I don't think either of us quite appreciated the significance of both parents being allowed to the theatre floor (it's normally just one). Well maybe we did, but it was just another item on a very long list of things we were trying not to think about.

I hope you never find yourself trying to kill time (is kill a bad choice of word?) while your child is having brain stem - or any kind of - surgery, because honestly, it's f***ing awful. I have very little advice, other than KEEP WALKING. We walked all over Bristol, visited tourist attractions we'd never considered visiting before, ate a lot of unnecessary food, climbed up a lot of stairs and climbed down a lot of stairs again. We had the fortunate distraction of me needing to express milk every three hours, which actually gave the day some useful structure and made time pass perhaps a little quicker than it might have done. (FYI, hospital-grade electric breast pumps are bizarre but fantastic contraptions... and they're on wheels - say whaaat?!).

At about 4pm we were told that the Consultant Anaesthetist was on the phone for us and our stomachs went through the floor. He was happy - the operation was going as well as he could have hoped and Rory was doing really well. They'd be in theatre for at least another 3 hours, but we could relax a little (ha!). 5 hours later we were told we could go down to recovery to pick Rory up. He'd had beds reserved for him on both the High Dependency Unit and the Paediatric Intensive Care Unit, just in case. Thankfully, Rory was already doing well enough post-op that PICU wasn't necessary and he could go straight to HDU. We'd been shown both in advance, just so it wasn't quite so scary seeing Rory hooked up to all the machines for the first time immediately post-surgery, but we still sat in his giant room in HDU staring at the empty space where his bed would go feeling really daunted. He's so small - how could he possibly need all this space and technology? How had life brought us here?

10 hours later and I have never felt so overjoyed to see anybody in my life (awkward apologies to those I've spent 10 hours without before) - there was our little boy in one piece, grumpy and sleepy in recovery. We had no idea what the side effects would be at that moment, we just knew that he was alive and breathing on his own. The Consultant Neurosurgeon came to see us briefly post-op to confirm that he'd successfully done a biopsy, drained the cyst and resected as much as he safely could, although there was definitely some tumour left. That. Man. Is. A. Hero. The Anaesthetist too.

Rory's HDU stay was amazingly short. He arrived on the Friday evening and we were transferred back to Bluebell on Monday afternoon. We wholly believe that this is in part down to the bloody brilliant HDU nurses and doctors, but it's also, of course, thanks to the equally phenomenal surgery team and the fact that Rory has at least 50% Yorkshire blood. (Maybe marginally less with every blood transfusion - depends on who the blood's come from I guess...). He had got rid of 7 of his 9 lines by the time we were moved out of HDU, we were able to hold him and he was crying almost as normal. The cranial nerves that had been compromised by the tumour are responsible for many crucial functions, including breathing, swallowing and controlling heart rate. The only thing we had yet to tick off when leaving HDU was swallowing. In fact the only major side effect was palsy on the right-hand side of his face, the symptoms of which had already been present before surgery anyway.

In all our bouncing around celebrating his speedy recovery we kind of forgot that the surgery was only the beginning of Rory's brain tumour journey, but everyone medical seemed so confident that it was benign that it had taken a back seat in our minds. Our Clinical Nurse Specialist (CNS) texted us on the morning of Wednesday 13th November* to say that they'd had some initial results from the biopsy. It was as we were led to the Quiet Room of Doom (we should have known) and she warned us that 'it was more complicated than they'd initially thought' that we suddenly sobered up and realised how naive we felt having celebrated anything at all.

And there it was: Rory's brain tumour was cancerous. The biopsy had diagnosed the tumour as a high grade medulloblastoma. Some sources capitalise the 'm' but it absolutely does not deserve that status. By all means go and research it, but to save you time, I'll summarise: it's shit. The Consultant Neurosurgeon, Oncologist and CNS who delivered the news were empathetic and calm and thorough, but I couldn't tell you anything beyond the word 'cancerous'. We had to meet our CNS again later on to get her to simply repeat the whole meeting as we'd not processed anything at all. (She was very lovely and reassured us that that's totally normal).

And so began the much, much longer road. Children under three (or four, depending on who you talk to) are not given radiotherapy because of the long-term damage to tissue. Unfortunately this is currently one of the most effective ways to treat medulloblastoma, so instead, Rory needed particularly intensive chemotherapy. His Paediatric Neuro-Oncologist wanted to start an aggressive chemotherapy regime as soon as possible i.e. two weeks post-surgery. He had his Hickman line inserted on 22nd November, along with a lumbar puncture to check for any rogue cancerous cells in his cerebrospinal fluid (thankfully there were none), and on 25th November he began cycle 1 of chemotherapy.


*The only good thing to come out of Wednesday 13th was that Rory breastfed for the first time (again!). His swallowing was officially fine post-op and the palsy was literally the only obvious side effect. I mean, it's all relative, but we actually count ourselves lucky in this process because we get to see a lot of usual baby 'firsts' all over again. Including Rory's 'first' (second) smile...

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