Painful lumps on teenager’s neck turned out to be rare cancer
The mother of a teenage boy battling a rare cancer has revealed that life-saving treatment abroad, funded by public generosity, represents their “last hope” for her son, who “wouldn’t be here” without the donations.
Sam Holson, 50, from Godmanchester, Cambridgeshire, is currently in Germany with her 14-year-old son, Jamie, as he undergoes specialist care.
Jamie first noticed lumps on the right side of his neck during a family holiday in April 2023.
Initially dismissed, the lumps grew painful, prompting his mother, who stepped back from her marketing role due to his health, to seek medical attention for Jamie.
In June 2023, Jamie was diagnosed with alveolar rhabdomyosarcoma, a rare soft tissue cancer affecting an average of just 31 people in England annually, according to Sarcoma UK.
The diagnosis devastated the family. Jamie underwent two courses of chemotherapy, achieving remission twice, but relapsing on each occasion.
With his treatment options becoming “limited” on the NHS, his parents began exploring overseas alternatives.
A GoFundMe page was launched, raising more than £300,000 in “amazing” and “generous” donations. Since June this year, Sam and Jamie have been residing at a medical clinic in Germany, where the teenager is receiving the crucial cancer treatment.
Sam now estimates the family has spent most of the money originally collated with the fees of Jamie’s “incredibly expensive” care – and she said they will need another £300,000 for her son to receive the major immunotherapy vaccine he needs to survive.
Speaking from the clinic in Germany, Sam told PA Real Life: “This is our last hope, our last resort if you like.
“Without the support we have had, without the fundraising, Jamie wouldn’t be here now.
“We’re so grateful that he’s being given a chance at life and we’re relying massively on the kindness and generosity of people, family, friends and strangers.
“We’re prepared to remortgage our house if we have to and do everything we can, but any support we get means the world to us.”
Sam described her son as “incredibly fit” prior to his diagnosis, and he would play football five times a week as the captain of his school’s team.
Jamie was 12 when he first noticed one or two lumps on the right side of his neck while on a family holiday in Spain in April 2023.
“Over the next few weeks, they became quite prominent and they seemed to grow quickly,” Sam said.
Sam took Jamie to the family’s GP where she said he was examined and prescribed antibiotics, as his symptoms were thought to be from an infection.
A few weeks later while Sam was away on a business trip, Adam, a self-employed painter and decorator, phoned her to say he had taken Jamie to A&E at their local Hinchingbrooke Hospital as the lumps had started to become painful.
Sam said Jamie underwent further tests and examinations, and he was prescribed antibiotics once more.
Within a few days, Sam said the lumps were getting “bigger and bigger” and “more painful”, and the family were becoming increasingly “anxious”.
Sam said doctors then “determined the lumps were cancer” but it was unclear what type – and Jamie was admitted to Addenbrooke’s Hospital in Cambridge.
In June 2023, Jamie was officially diagnosed with alveolar rhabdomyosarcoma, a rare, soft tissue cancer where tumours develop from muscle or fibrous tissue and can grow in any part of the body, according to the NHS.
Sam added her son’s cancer was stage four and his prognosis was “grim”.
“You almost can’t believe it’s happening, you have an out-of-body experience and it doesn’t seem real,” Sam said.
“Jamie handled the whole thing incredibly well, he mostly takes it all in his stride.”
Jamie quickly started a six-month course of “harsh” chemotherapy treatment.
“It was relentless, it was tiring, it was stressful, exhausting – everything you can possibly imagine,” Sam recalled.
Sam said a three-month routine scan revealed Jamie was going into remission and that, after he completed the treatment course in December 2023, he could return to a semblance of normality.
“It was great news, he started to go back to school, his hair started to grow back and he started to put on weight,” Sam said.
A few months later in May 2024, however, Jamie noticed a pain in his side and scans revealed his cancer had returned.
He was put on another 10-month course of chemotherapy treatment, this time using a different drug.
After three rounds of treatment, Sam said scans showed Jamie had gone into remission again, and he completed his treatment course in February this year.
“We thought ‘great, we’ve done it again’,” Sam said.
“Jamie looked healthy, he had energy – it was almost like he had gone back to normal.”
Unfortunately, a routine scan in April this year showed the disease had returned once more, which “floored” and “devastated” the family.
Knowing treatment options were now “limited” on the NHS, Sam said they started looking further afield.
They discovered an immunotherapy vaccine at a clinic in Germany, which would use Jamie’s immune system to fight the cancerous cells in his body, but the family would need to pay to receive it.
They launched a GoFundMe page for support, which has raised more than £378,000 to date – and Sam said the family are “incredibly grateful” and “blessed”.
For the last six weeks, Jamie has been receiving life-saving cancer treatment at the clinic, which includes targeted and personalised immunotherapy treatments, genomic profiling and weekly IV infusions, and he appears to be responding well.
Sam said most of the money raised has now been spent, and they need to raise further funds to allow Jamie to receive a major immunotherapy vaccine “to give him the best chance of long-term remission” – which she estimates will cost another £300,000 in total.
“The vaccines range from 5,000 (£4,329) to 20,000 Euros (£17,317), to stay at the clinic it’s 1,300 Euros (£1,125) a night,” Sam explained.
“Every treatment on top of that, every medication, is an additional fee.
“It seems to be working but it’s incredibly expensive.”
Jamie has been sharing his story on various social media platforms under the name Jamie’s Quest – and his most popular TikTok video, where he addresses his followers and asks for help, has earned more than 1.4 million views.
“It’s great because I want people to understand why we’re trying to raise such a vast amount of money,” Sam said.
“Without that, Jamie wouldn’t be sitting here right now.”
To find out more, visit Jamie’s fundraising page here: gofundme.com/f/life-saving-cancer-treatment-for-jamie
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