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  • Writer's pictureAmy

The Very Beginning - The Facts

Updated: Dec 19, 2019

Where to begin? Maybe it's best to begin with the facts and offload all the emotional baggage later... (you can look forward to that... there's a lot). I promise there will be some light-heartedness in later blogs, but let's wade through the hardcore stuff first.

Around about mid-September this year, we began to notice that Rory looked quite cross-eyed. I think we noticed it in photographs initially (because who doesn't take 265 photos of their child daily in 2019?) and then became quickly aware of it in everyday life too. We didn't panic too much; we assumed it was a squint or a lazy eye and decided to talk to the GP if it persisted for a few weeks. Which it did - so off to the GP Rory and I went on 7th October.

Here's Rory pre-squint on 9th September and then with his squint on 27th September.

The GP was very thorough, although the symptoms are hard to pinpoint with a four-month-old - who knows whether they're not tracking a toy with their eyes because they can't or because they simply don't fancy it? After a brief examination, she concluded that there wasn't something obviously wrong with his eyes, but it was best to refer to the eye hospital for further investigations and off we went to the Bristol Eye Hospital the following Friday. Fortunately Matt had taken the afternoon off, so we went as a family - a merciful decision given the speedy decline of the situation over the next 24 hours.

We were seen by various ophthalmologists over a couple of hours, all of whom were increasingly puzzled by the symptoms as there seemed to be nothing wrong with the structure of his eyes. We weren't due to see a consultant, but luckily all the consultant ophthalmologists were in for a meeting and one stayed late specifically to have a look at Rory. She told us not to panic, but that she recommended going straight up to the Children's Hospital for an urgent MRI scan - she called ahead as we began the 3 minute walk up the hill to BRHC. We arrived, but unfortunately so did a lot of Bristol's paediatric community, and although A&E were brilliant, we ended up getting sent home overnight to come back in first thing the next morning for the MRI. While we were waiting in A&E, the doctor looking after Rory asked to see his measurement charts in his red book, particularly his head size. His head circumference had shot up from the 91st centile at 6 weeks old to the 99.6th at 17 weeks*. The doctor's reaction to this was the moment at which the sinking reality of the potential diagnosis began to slowly dawn on us both. Neither of us wanted to say it out loud, but both Matt and I were thinking the same thing - the squint could well be caused by a brain tumour.

Having had a night of normality at home in which to mull things over (and regretting spending a dangerous amount of time with Dr Google) we came in to Bluebell Ward at BRHC early on Saturday morning. As we waited in our bay, looking at surroundings we hoped weren't going to become familiar, one of the doctors came in and prepared us for exactly the thing we didn't want to hear: they were scanning Rory's brain because they suspected he might have a brain tumour. Many hours later, just after lunchtime, a hangry Rory was taken off to have his first general anaesthetic while Matt and I suddenly found ourselves empty-handed. We went for a walk up St Michael's Hill and tried to think positively, but deep down I think we both knew what was coming.

We arrived back at the hospital**, breathed a sigh of relief at being able to hold our boy again (little did we know how much harder it would be leaving him in that anaesthetic room three weeks later) and returned to Bluebell. The results came too quickly to be good news. We were asked if we wanted a nurse to watch Rory while we were told the results, but we refused - there was no way we were letting him go. And so the three of us were escorted off to the Quiet Room of Doom (as it shall henceforth be known) along with a crowd of very sympathetic looking people. I couldn't tell you who any of them were now, it was all too much of a blur.

There's nothing in the world that can prepare you for hearing devastating news. You can kind of play all the terrible scenarios out in your mind, but even if you half expect to be told your child has a tumour, there's just no way of catching yourself as you fall. No imaginable guard you can put up to make the blow any softer; no face brave enough to hide the fact that your heart has just broken.

But let's pause right there. I promised to leave the emotional stuff for another time.

In short, we were told that the scan showed a mass in Rory's brain stem that shouldn't be there. In other words, a brain tumour. We were left in the Quiet Room of Doom to come to terms with things before returning to the ward to wait for various people to be introduced to us. Because it was a weekend, the flow of introductions was quite gradual, but this was a good thing - it was overwhelming enough as it was. The first person we met was a Neurosurgeon who'd come as soon as he could at the end of surgery in Southmead Hospital. He talked us through the scans and explained a brief treatment outlook. Rory was put on hefty steroids straightaway and admitted overnight for monitoring. The following morning we met a Consultant Neurosurgeon who explained everything in further depth, including the severity of the situation, namely the location of the tumour. Initially they thought that the tumour, because of its cystic nature, was benign and wasn't too scary - it was just where it was growing that was shitty.

Over the next week or so we met more people than I think Rory had met in his lifetime to that point. We met Paediatric Neurosurgeons, Paediatric Oncologists, Clinical Nurse Specialists, Dieticians, Physiotherapists, a Music Therapist, General Paediatricians, a Speech and Language Therapist, Anaesthetists, Endocrinologists, Chaplaincy team members, a CLIC Sargent Social Worker and many, many other brilliant nurses and doctors. The speed with which the journey began was both shocking and amazing. Everything we thought we knew about our little family ground had disappeared beneath our feet, but it was rebuilt by the BRHC team as fast as possible: all three of us were instantly so supported and we established a "new normal" weirdly quickly.

And so Rory's Brain Tumour Story began.


*It turned out that his head circumference had nothing to do with the tumour as there was no excess fluid present around his brain at the time of the MRI. He just has an abnormally large head...!

**When we arrived back at the hospital to wait for Rory to go into recovery post-scan, we got to the front doors and were greeted by a security guard who said nobody was allowed in or out of the hospital. They were on lockdown - he couldn't tell us why. If you think waiting for your child to come out of an MRI scan with a potential brain tumour is stressful, try adding being inexplicably banned from being in the same building as them while some unknown security shit goes down. Turns out it was a totally harmless absconder from one of the wards, but that has to have been one of the longest 15 minutes of our lives. Except perhaps the 10-hour brain surgery three weeks later...

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