The teenager with an incredibly rare heart cancer who will leave a lasting legacy

02 October 2023

Rosie Jarman was described by her parents as a “bright, beautiful and intelligent” teenager who was a success at everything she turned her hand to. As well as having a gift for art, she had a passion for fast cars, acting and the outdoors.

But at the age of just 14 her life was turned upside down by the most devastating diagnosis. It was discovered that the formerly active young woman had been living with an incredibly rare heart tumour which has only ever been found in 35 other people, including just five children, worldwide.

Yet instead of dwelling on the crushing news, Rosie made the decision to “own” her illness by diligently documenting her cancer journey. Her aim was to support other families in similar situations and help medical professionals learn more about her highly unusual form of the disease.

“Throughout all her treatment, no matter how painful it was or how poorly it made her feel, she would always say ‘thank you’ to the people who looked after her – that’s the sort of girl she was,” said her mother Kathryn Jarman. “But she was also focused, determined and strong. Our little Rosie will be leaving a huge legacy and we’re so incredibly proud of her.”

In July 2021, after completing four Duke of Edinburgh expeditions, Rosie began complaining of feeling very fatigued – a symptom her parents initially assumed was down to her weeks of trekking and mountain climbing.

“We thought she’d just burnt herself out, but then she began vomiting every couple of days through August,” Kathryn recalled. “She’d had migraines in the past and was also diagnosed with Covid-19 earlier in the year, so there were worries she may have long Covid. She had undergone a brain MRI scan the previous May which came back clear.”

In the days that followed, Rosie started suffering with terrible cramp in one of her legs and began throwing up the anti-sickness tablets prescribed to her by her GP. “Again, we thought perhaps her body salts were all out of whack – but things just didn’t get any better,” said Kathryn.

When their GP suspected Rosie may have atypical pneumonia, she was told to visit The Grange University Hospital in Cwmbran where doctors discovered that her heart was beating more quickly than normal. They made the decision to carry out a brain scan which found three small emboli that hadn’t been there a few months before. She was put on a drip and more tests were carried out to determine where they had come from.

“She got to the point [in the hospital] where she couldn’t lean backwards. What we didn’t realise was that her lungs were filling up with fluid, and every time she tried to go to sleep or to relax, her oxygen levels would drop, the machines would all start beeping, and the staff would have to wake her up. For almost a week she couldn’t go to sleep which must have been torture.”

On day six of her stay at The Grange, an ultrasound was carried out on Rosie’s heart which revealed a 15cm tumour which, at the time, was thought to be benign. It was so big that parts of it had broken off and travelled to her leg, causing the severe cramp she had previously experienced.

“She could have been walking around B&M and just dropped dead,” explained Kathryn.

Within hours of the discovery in October 2021, the patient transport team WATCh (Wales and West Acute Transport for Children) took Rosie to Evelina London Children’s Hospital for emergency open heart surgery.

Rosie’s father, Gareth Jarman, said: “It was a huge shock, but you don’t think worst-case scenario. We just had to focus on the next step. When the consultant told us there was a 2% chance of her dying [from the operation], that was when it really started to hit home.”

Although the procedure was meant to take five hours, it ended up running over by more than two hours as the tumour was so heavy it had stretched the mitral valve between her heart chambers. Nevertheless, the surgery was deemed a success.

“When she came around from the operation, the medication she was on was so strong that she couldn’t open her eyelids,” Kathryn added. “She communicated with us using only her finger. We were so proud of her.

“Within 24 hours they were taking her breathing tubes out and she was able to sit up in bed. We were only allowed to give her small amounts of fluid, but Rosie discovered she could have ice lollies so she went through absolutely loads of them. Her resilience was insane.”

Following a biopsy of the tumour, which was sent to the Royal Marsden Hospital in London, doctors sat Rosie’s parents down and gave them the truly heartbreaking news that their teenage daughter was living with cardiac cancer.

“It’s difficult to comprehend the odds of our daughter having such a rare cancer. You’d have a far better chance of winning the lottery,” Gareth said. “It was the worst thing you could ever expect.”

In November 2021, shortly after her discharge from Evelina London Children’s Hospital, Rosie found herself at the Noah’s Ark Children’s Hospital for Wales in Cardiff undergoing six rounds of adult-grade chemotherapy. The site, on the grounds of the University Hospital of Wales, became a second home to the teenager and her parents who struck up long-lasting friendships with the doctors and nurses.

“As it was Covid-19, only one of us could be with her at one time,” Kathryn added. “We also had to look after our daughter Molly who’s only 18 months younger than Rosie.

“Rosie’s body had gone through so much by this point, but she was an absolute trooper. Losing her hair was very difficult, but one of the nurses [at the children’s hospital] gave her a lovely head scarf. We contacted the Little Princess Trust straight away [for a wig] and Molly made her sister a little box to keep her wig in.”

Towards the end of her chemotherapy treatment, the decision was made to transfer Rosie to Manchester for six weeks of proton beam therapy, a form of targeted radiation treatment to destroy any remaining tumour cells. Before she went, an MRI scan found no evidence of emboli in her brain, but there were infarcts where they had been.

“We made some lovely friends in Manchester. There were a group of teenagers who took Rosie under their wing,” Kathryn added. “But she got more and more poorly and started vomiting again.”

While Rosie’s proton beam treatment was meant to last 33 rounds, it was stopped at 30 due to her ill-health and the family made their way home to the Brecon Beacons, Powys, to rest and rehabilitate. However, just a couple of days later Rosie began complaining of terrible headaches and became paralysed down the left side of her body.

Kathryn added: “She had signs of a stroke. Gareth carried her downstairs and an ambulance crew was outside to take her to The Grange once again.”

A further MRI scan was carried out which revealed, to the family’s despair, that Rosie had three tumours in her brain which had grown during her six weeks of proton beam therapy Manchester. She was then transferred back to Noah’s Ark Children’s Hospital where clinicians confirmed that the teenager’s care would now need to be palliative.

A hospital bed was put in her living room at home, and for the three weeks of her life – thanks to the charity Dreams & Wishes – Rosie and her family were able to share some incredible memories.

Kathryn said: “We explained to the charity that Rosie loved fast cars, and the next day a Lamborghini pulled up outside and they put her in. She then went up in a plane and the pilot gave her the controls! Her final moments were very special.”

After seeing her closest friends, and spending time baking with sister Molly, Rosie passed away at home on June 27, 2022.

Throughout her illness, whenever she felt well enough Rosie would keep a detailed diary of her treatment. She also penned advice and tips for parents and children on what to expect in hospital and what things to take ahead of time.

“I didn’t realise how much work Rosie had put into it until I looked at it after she’d passed away,” Kathryn added. “I helped her with bits and pieces of it, but this is very much her own work.

“I think her resilient, beautiful and humorous personality comes through in the book. She also provides information about the different childhood cancers, treatment and procedures, as well as more detail about her actual cancer. It’s been reviewed by her consultant so it’s all technically accurate.

“She has also provided patient and family lists for those going into hospital for treatment. At the end of the book there are thank-you pages for the many amazing charities and organisations that have helped her - and us - along the way.”

All the money raised from the book, called A Mountain in My Heart, will go towards the various charities that helped Rosie, including Dreams & Wishes and Latch. The family also wanted to pay tribute to all the clinicians who they came into contact with during her ordeal, including those at Cardiff and Vale University Health Board.

Gareth added: “We know the professionals did the very best that they could given the highly rare nature of her cancer and the information that they had.”

You can now buy A Mountain in My Heart by going here.