Toby’s story – “CLIC Sargent made the difference for our family between coping and just not coping at all”

Toby was diagnosed with Metastatic Germ Cell Tumour in September 2017 when he was just two years old. Dad Adam explains the importance of being able to use a CLIC Sargent Home from Home when treatment took the family 200 miles away from home in North Devon to Bristol.

“Toby had a couple of funny turns. He went limp in the bath when my wife had been at home with him and his breathing went all strange. But when we were on the children’s ward at our local hospital, the consultant did a lot of checks but didn’t notice a huge tumour in his abdomen. They just said he had a stomach bug virus and to go home.

“A week later, my wife and my mum had gone swimming with him and one of my nephews and they noticed in the shower afterwards that there was a lump coming out from under his ribs. They were due to take him to an ultrasound the next day but he ended up passing out from the pain the next morning and he fell over when my wife was dropping our daughter to school. He was taken to hospital in an ambulance and after ultra-scans and X-rays, he was diagnosed with cancer. We found out he’d had the cancer when he was in the womb before he was born so he’d had it his whole life so it must have been growing with him.

“It was a complete shock because he seemed so well. Other than a couple of these funny turns, we didn’t suspect anything. In the days before the lump was spotted, that really worried me and when I heard he’d fallen in the playground and got taken to hospital, I knew it was something serious. But I never ever thought it would be cancer. When he was diagnosed, there was a huge mix of different emotions. I just assumed the worst.”

The family live in north Devon, but their nearest specialist treatment centre is in Bristol – 200 miles from home.

“Within 24 hours, we were up in Bristol and for five to six weeks, we were pretty much Bristol-based living in CLIC House.”

“Toby started his first cycle of chemotherapy in October 2017. He then had a further five three-day chemotherapy rounds at Exeter hospital with three weeks in between each one. The chemotherapy made him really unwell and there were long days in hospital hooked up to the machine. Toby had all sorts of side effects. A lot of his hair fell off then we got it shaved. His face got quite sore and his bum got sore too. On occasion, Toby would be vomiting because they didn’t quite get the anti-sickness medicine right. Because he was neutropenic, Toby couldn’t go out of the house to see or do a lot of things that he wanted to be doing.”

Throughout the ordeal, the family were able to stay at CLIC Sargent’s Bristol Home from Home, CLIC House, which took away some of the financial implications of having to travel back and forwards.  This meant both parents were able to be Bristol-based throughout Toby’s cancer treatment.

Adam said: “We would not have coped without CLIC Sargent. They made the difference for our family between coping and just not coping at all. We wouldn’t have been able to travel up from North Devon to Bristol every day. It’s a two-hour journey each way so travelling each day wasn’t an option. We would have been at hotels or be B&Bs and we couldn’t have afforded to do it. Without CLIC Sargent, the alternative would have been we wouldn’t have been able to afford to stay in Bristol for the time.

“And it’s not just that – it’s all the other support you get at CLIC House. The help with washing and all other stuff you’d never get in a hotel or a B&B which means you can really focus on your child and not having to think about other stuff. Without the CLIC House and the people that worked there, it would have been really difficult – we had no friends or family there, it was just the two of us.

“That would have meant a lot more travel and pressure on one person that was staying in Bristol and that would have been really difficult.

“The fact we were both able to be there with Toby throughout spread the strain across us both. As only one of us was allowed on the ward, every day, we could alternate a night on the ward and then we got a night in CLIC house so it meant we got a good night’s sleep every night.”

Toby had his first cycle of chemotherapy in October 2017. He then had a further 5 three-day chemotherapy rounds at Exeter hospital with three weeks in between each one.

Although Toby has been in remission since April 2018 and has since started school, the family continue to travel to Exeter hospital for follow-up blood tests and various scans and this will continue for another 18 months.

The Holder family are backing CLIC Sargent’s call for a Young Cancer Patient Travel Fund. Sign your support to ask all party leaders to commit to the fund if they become the next Prime Minister.