Sam, Josh, Orean and Miles were teenagers and young adults (TYAs) when their cancer journeys began during the coronavirus pandemic.
The four young boys were all diagnosed with osteosarcoma and received treatment together every Tuesday at University College Hospital in London.
If you are mathematically inclined, you may find yourself wondering 'what are the chances.' Well, on average, 42 young people aged 15-24 are diagnosed with osteosarcoma each year in the UK. The boys were, for lack of a better word, unlucky. But the friendship that blossomed shows how light can be found even in the darkest of places.
Parents Jenny, Fellecia, Katherine, Sarah and their boys spent many nights at the Cotton Rooms, the UK's first purpose-built hotel for patients undergoing cancer treatment. Away from the smell of disinfectant and bleeping of heart monitors they enjoyed takeout pizzas, playing pool and watching football matches, reminding them that a life with cancer is still a life. Katherine, Josh's mum, even recalls being told to move to a corner of the ward as they were laughing too loudly, an unexpected aspect to what she thought her son's treatment would be like.
"Because immunotherapy is an expensive treatment, it was offered to patients in groups on either a Tuesday or a Friday. From one vile of mifamurtide you get two doses," Jenny, a registered nurse and mother to Sam, explained.
This type of treatment causes similar side effects to chemotherapy, meaning that patients can become unwell and weakened for several days afterwards. Jenny, Fellecia and Katherine all wanted to give their sons chance to recover before the weekend so that life could continue as normally as possible. It was here that their friendship grew, and the See You Next Tuesday group was born.
Katherine was blindsided when she found herself part of a club no-one would want to be in, but tells us she wouldn't be without it now. "It was so helpful being around other parents who you can openly talk about your feelings and what's been going on. These are the people you can share the scanxiety, follow-up worries, and other issues with that will truly understand what you're going through," she said.
New beginnings provided a sense of normality for the group as Fellecia, Orean's mum, was pregnant while her son was going through treatment. The birth of her baby, Zaya, was a welcome distraction and healthy diversion for them. "It provided a glimpse back at ordinary life where you're not talking about cancer. You would think here he is a week later and he's doing this now. Watching him grow was a snap back to life as we once knew it," Jenny shared.
Sarah and her son, Miles, were the newest members of the See You Next Tuesday club after Miles was diagnosed in November 2021. It brought Sarah and Miles comfort to see other young patients further along in their treatment journey because, as Sarah put it, "laughter, big smiles and conversation are good, especially when you are newbies at chemotherapy."
Today, Sam, Josh and Orean have finished treatment and are doing well in their recoveries. Despite his scans showing no evidence of disease (NED) and returning to school, Miles' condition tragically worsened when his cancer returned and spread to other parts of his body. Miles sadly passed away on 31st December 2022.
In his memory, Miles' family have set up a Special Fund, called the Team Miles Forever Fund, to bring together his family and friends to raise vital funds for research and, in their words, "act as a lasting reminder to be more like Miles everyday: fun, fearless and bold."
Sam, Josh, Orean and their families have also thrown themselves into fundraising, with Sam explaining:
"I decided to raise funds along with the help of family and friends for the Bone Cancer Research Trust as the journey I have been through has shown me that there are those less fortunate with their treatment. Seeing a 14-year-old who has lost his arm, but is still smiling playing his iPad, and hearing of those being given life expectancies instead of end of treatment dates, will truly break your heart."
To find out more about our Special Funds, please visit the link below:
If you have been impacted by primary bone cancer and/or the themes discussed in this article, please get in touch with our Support & Information Team via Tel: 0800 111 4855 or email support@bcrt.org.uk
The See You Next Tuesday group
