During Mason’s chemo we were told it was likely that he would need radiotherapy. Our initial impressions were….okay? How does that differ from what we’ve been going through before, and why does he need something extra?
As previously mentioned, chemo did a good job at shrinking the tumour to less than 30% of its initial size, the operation would have the core removed but due to not being able to achieve a negative margin there would still be fragments present around the main site. This is where, we were told, radiotherapy would come and flex some muscle.
Mason was recommended for Proton radiotherapy, an advancement of traditional X-Ray radiotherapy, favoured for young children. He/we would be required to attend an intensive 6-week treatment cycle in Manchester where he would receive 30 sessions.
…Took a few cuppas to absorb all of that!.
We discovered that Proton favours the young (people who are generally still growing) and people with that need treatment from the neck up, due to the precision the beam is impact a tumour without impacting surrounding areas. Traditional radiotherapy would give Mason’s tumour a good seeing too, but it would likely damage the surrounding area and stunt growth for the remainder of his life, for example whilst the rest of his body grows at 100% the targeted area would grow to only 80%.
Proton treatment is new and very expensive, it’s decided on a case-by-case basis. Manchester is home the UK’s first Proton treatment centre (NHS Christie’s was recently opened there in late 2018) and it pretty much the main place to go. During his treatment we discovered that the UK’s second Proton site being developed is in University College London Hospital. This is a great thing for the UK and for our little people who will benefit for this ‘space age’ treatment.
The short 4min clip below, is an excellent overview of proton treatment as well as showing off NHS Christie in Manchester. Dr Ed Smith in the clip was Masons consultant for his treatment.
We visited Manchester and the Proton centre two weeks prior to his treatment for pre-assessment. During this visit he would have another set of scans, a ‘Mason mould’ (made for his body to lock him in still for proton beam blasting) and receive his first set of tattoo’s. During the six-week course, Mase would require proton blasting every morning with the exception of the weekends. For each session he would require a general anesthetic (GA), then transferred into his custom mould before aligning the proton beam against his tattooed dots on his stomach and back. The proton beam blast would last between 60-90 seconds - though the prep before and recovery after made each morning a five hour affair. The process for babies/toddlers so much longer than it would be for an adult and as always, with a GA, he would be nil by mouth, and, so were we. Throughout this whole process – if Mason doesn’t eat or drink neither do we.
The proton centre is state of the art, clean, modern and a pleasure to attend. A real credit to Manchester and the NHS. The staff were excellent and there was always plenty of people at hand to support. On level one they have a big open play ‘waiting’ room which became Masons daily run around, where he would grab dinosaurs and roar at all the staff, throw balls at people and climb on the furniture. Each morning we would spend an hour or so in there whilst his obs were done and anesthetists were ready to see him.
The first two weeks went very well, then he started to cotton on to the fact that he is being continually put to sleep on the daily. Either mum or I would walk him through to the gantry room for his morning shot of Propofol but he soon started to fight it and become irritated. We had to change things up, and as a parent sometimes the art of distraction is key to things running smoothly. For the remainder of his sessions he was walked in, flown in like superman or a helicopter, piggybacked in…we high five'd all the animals on the wall, we played peek-a-boo with the staff when the doors opened, we brought his toys in, had a bubble machine going and most important distraction of all, my phone with home videos of all of us playing in the garden. He would point at the screen when he could hear Paige and Em, goo gag gaagga……cough, eyes rolled back, and he’s out! Oxygen mask on, tubes in, monitors attached….thanks mum/dad – see you later. We fine tuned the whole process of me carrying him in from the toy room to returning to about 3 minutes from session 10 onwards.
The effects of radiotherapy cause irritation to the skin impacted. It causes the skin to weaken, breakdown, blister, bleed etc… To combat this, we had medical creams of different types to continually apply throughout the day. They seem to work well, and Masons skin didn’t break down until post treatment.
We were told that being blasted in the mid-section – stomach area may cause disruption and irritation to his digestive system (again) and this would be the case around the fourth week mark. His side and back bright red like sunburn, his appetite lacking, he began to lose weight. We had a few episodes where he was sick for no real reason and we always ready to change his clothes frequently. There was one day we had off due to proton maintenance – and he gave us a pretty good stress test! We decided to venture over to Blackpool, had fish and chips with had a decent stroll up and down the seafront before Mason would deliver the download of his life as we put him back in the car. The nappy didn’t stand a chance, this was the first time I had to clean his armpits. How the hell is that even possible? And to add insult to injury – after we cleaned him up we had to go back to the hospital to get his Hickman line checked, cleaned and caps replaced.
Towards the end of his treatment, he regained his appetite, and gained some weight. Each day, post treatment as he regained consciousness we would be waiting by his side with a warm bottle of milk, pack of crisps, fruit smoothie pouch, kinder bars and what quickly became his favourite…..donuts! If there’s anytime in his life that he can follow the ‘Augustus Gloop’ diet its right now.
During our last week, Mason was on top form, as if he could sense it was coming to an end. He woke up with energy in the mornings, eager to give spuds to Alan the bus driver, before taking his car seat position on the bus to ride up front. He was cheeky and generously handing out high fives with staff at the proton centre. He had no idea when his treatment would end but somehow, I think he could sense his time had been served.
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If you have got this far in the post, well done - its one of the longer ones. We just wanted to reach out and share a fundraiser we started last month that has 3 days left to run. Please use the link below to support the Cost of Cancer.
Thank You