My son, Gideon, had just turned four in December 2018. We’d had a lovely Christmas and we’d gone back to school in January, but at the start of February he’d started complaining about pain in his ear. We whisked him to the GP for antibiotics thinking it was probably an ear infection, but the pain just got worse.
Gideon’s ear infection just wouldn’t clear up. We took him back to the GP and got antibiotics, and more antibiotics, but he was in more and more pain. The GP was getting more and more worried too and was looking in his ear and could see something, they said it could be a wart or something growing in his ear and that we should take him into hospital.
We went to our local hospital but they sent him home with more antibiotics. The GP said that it was concerning, that they’d sent us there to get a check-up and would write a letter on surgery paper saying ‘you have to check this boy out, he needs a scan, do not send him off with antibiotics’. They tried very hard not to see him, to send him home with more antibiotics, which was very stressful for his Granny, who had taken him in. She stood her ground and refused to leave the hospital, even when they said she had to go. They finally agreed to give him a CT scan and Granny called me back a few hours later to say there’s something really wrong, you need to come in, he’s going to be in the hospital for a while.
The Ear Nose and Throat (ENT) specialist referred Gideon to a consultant neurosurgeon at Birmingham Children’s Hospital. We hopped into an ambulance and shot along to Birmingham, where we went for a further CT scan and MRI scan. The biopsy came back very rapidly, confirming the worst. A very aggressive malignant cancer called Rhabdomyosarcoma that had started in his ear and broken into his brain cavity. We were given about a 5% chance of survival for my son to live.
We were quite distressed, as you can imagine. My wife was being driven in and out of hospital by various relatives, but I was with Gideon the whole time. He’s always been a bit of a daddy’s boy, which is partly because of my wife’s disability and me being the one to care for him physically, as well as us trying to sleep in hospital beds, which was never going to be viable for my wife.
It was a very emotional time – you’re distressed, you don’t know whether your income is going to come from anymore, you’ve got all of those practical worries and you’re trying to cope with some horrible things. Gideon was so disappointed that plans were being cancelled, plans that were so small to you, but they were everything in his little world.
Gideon had neurosurgery for about ten hours. They completely removed the tumour part that had broken into his brain cavity and they didn’t damage his brain in the process, just pushed it back like it was a sponge. They sealed the cavity leaving the rest of the tumour in place and he had this giant bowl on his head. The following morning, he woke up from the surgery and wanted to go and play karate in the playroom.
The tumour was growing at a rapid rate. They accelerated his treatment from there and put him on chemotherapy earlier than planned. There was an uncertain chunk of time where you’re waiting to hear whether you’ll get Proton Beam Therapy or not, which was a huge emotional strain, but we were lucky enough to get referred for it, so we were at the new Proton centre in Manchester for 31 days of radiotherapy.
After that, we were back for more chemotherapy, then a routine of maintenance chemotherapy and scans. We had a cancer reoccurrence scare last December at his primary tumour site and again, we were given a 5% chance of survival. Gideon went in for surgery and a biopsy but it was confirmed that it was treatment related – a skin callous where there’d been so much damage from the original tumour. It had been a bit of a heart-breaking January and February while that was happening, but things are feeling a bit more stable and normal again.
Gideon spent a lot of time out of school but his school was wonderful. They were so supportive of him home-learning and coming in when he could, and if he wasn’t well they would always call us. His PE teacher made adjustments so that things would be more engaging for Gideon, as a child with disabilities. I’ve been so impressed with them and I’m actually now a parent-governor at the school.
I was only given statutory sick pay by my new employer. We were living on savings and would have had to sell our house if we had not had an amazing bunch of friends that ran a GoFundMe campaign and raised about ten grand for us, which was phenomenal.
We had to be quite brutal, every bill that we could cancel got cancelled. You know you’ve got to buy extra bedding, you’ve got extra electricity costs because you’re doing a lot more laundry, and when you’re in hospital and have to eat, you end up spending more than you would on home cooked meals.
We’d have been much more adrift without any signposting or practical help from Young Lives vs Cancer. We would not have got the DLA, and our financial position would have been noticeably worse. The registration grant we got from Young Lives vs Cancer in the first weeks, it was a wonderful thing. Just what it represented, for us to really believe that there were actually people out there who wanted to help.
Our Young Lives vs Cancer social worker Chrissy helped us with was getting the blue badge and Disability Living Allowance sorted. She was really pushy to make this happen – in a really friendly, positive way. There was no way we would have had the mental headspace to deal with those things at that point. So some practical help from Chrissy to get those things in, some money, and things like the blue badge have been massively helpful for our appointments and parking and things.
We’d been in treatment for 15 months and we had managed it so carefully, we were down to like £400 in our bank account and we hadn’t gone into debt, we were just trying to land this and I was planning to go back to work part-time. Then our fridge freezer stopped working. I dropped Chrissy a line and she was great, she helped us apply for a grant and got us £200 to put towards it, so we got a nice new fridge and freezer and didn’t have to buy the cheapest thing we possibly could. That was another time that Young Lives vs Cancer came through for us.
I’ve stayed very involved with Young Lives vs Cancer parents and carers group and the Mind the Chaps dads groups on Facebook. Because one of the nicest things to do when you’ve had a horrible experience is to be there for other people. It’s a way of taking that burden from your past and making it a bit lighter. So there’s a little bit of good that’s come from this, that you can help someone else out a bit when other people can’t, because if you’ve not been through it yourself, I don’t think people really get it.
Following a cancer diagnosis, there are added expenses for families with a child or young person with cancer. We can help with everything from accessing PIP and DLA, as well as support with travel and accommodation costs near to hospital for young cancer patients.
Posted on Thursday 16 June 2022