A Suffolk family is trying to save another man from sarcoma

Before 15-year-old Isobel Sheppard died of a rare form of cancer, she left a file on her phone titled, ‘If I Die Young’.

The teenager from Bury St Edmunds, Suffolk, was diagnosed with synovial sarcoma in early 2020 after he suddenly struggled to walk.

In her file, she detailed her desire for memorial jewelry to be given to her friends and a celebration of her life with fireworks to be held on her birthday every year.

Her mother, Sam Sheppard, along with two other women in the county, want to learn more about this rare cancer during Sarcoma Awareness Month this July.

In late 2019 when Isobel was 12, she complained of numbness in her left leg, but Mrs Sheppard said her family were not worried.

But in January 2020 during school Isobel called her parents that she couldn’t walk.

After a series of hospital scans, an eight by five by 13 centimeter tumor was found in her groin, which Mrs Sheppard described as “absolutely gross”.

Isobel had synovial sarcoma – a type of cancer that grows in the cells around joints and tendons – which the family had never heard of.

He was soon after chemotherapy and had his entire left leg amputated.

“Isobel is an absolute warrior,” Mrs Sheppard said.

“He’s had a rough few days, but he’s handling it well,”

While the treatment was initially successful for two years, Isobel unfortunately relapsed in October 2022 with multiple tumors found in her body.

“The X-rays he does every three or four months miss (the tumor) – it’s behind his heart,” Mrs Sheppard said.

“He didn’t know he was back until he was at his best.”

He died on December 14, 2022 before his family found the file on his cell phone with his last wishes.

“Isobel is strong-minded, funny, sassy and she’s kind, helpful and caring. She’s wonderful,” added Mrs Sheppard.

Her mother urged anyone with a lump to get checked.

Holly Lewis, 29, from Ipswich, felt pain in her arm while driving in 2020.

Doctors soon after diagnosed osteosarcoma – a type of bone sarcoma that mostly affects the bones of the knee, thigh or shin or upper arm.

A tumor measuring around 11cm was found in her armpit and shortly after the initial diagnosis, doctors told her it was stage four.

“I think it’s because the tumor is obviously hitting the nerves that go through the shoulder, to the elbow, the wrist and the fingers,” he said.

“Then I got the diagnosis – and I remember the date clearly – I was diagnosed on January 7, 2021, 9 days before my 26th birthday.

“If you were told, you’d be shocked. You can’t understand the impact.”

Miss Lewis has had four operations as well as six rounds of chemotherapy and is now fortunately stable despite the fact that the cancer is incurable.

He added he had never heard of sarcoma before he was diagnosed.

“I never thought I would see the day when I was diagnosed,” she said.

“I (think) it’s very important to check yourself and not leave.”

In 2020, Jack Harper, from Lowestoft, thought he had heartburn after losing weight, but it turned out to be angiosarcoma – a sarcoma that grows from the cells that line blood vessels.

According to Sarcoma UK, it accounts for only 0.05% of all cancer diagnoses.

His wife, Fiona Harper, said a fist-sized tumor was found in his heart and that he would need open heart surgery at the Royal Papworth Hospital in Cambridgeshire to remove it.

While the surgery was successful and chemotherapy throughout the year, Jack made improvements, in the late summer of 2021 he declined again.

“We never found out how long we had left, we were always hopeful. We never thought it was game over for us,” Mrs. Harper said.

“We thought this cancer did not beat us – he was 36 and we had two children. We did not give up.”

In January 2022, after a difficult battle, Jack was placed in palliative care.

“In April, we were very sad to lose him, he became very ill,” Mrs Harper said.

“I remember him telling me a few days before, I can’t do this anymore.

“He’s a wonderful person, a beautiful person, selfless.”

Mrs Harper and the couple’s son Arthur, nine, will walk the length of the South Downs Way in Sussex from July 20 to raise awareness and money for Sarcoma UK.

His daughter Agnes, five, also occasionally joins him on walks

He explained that raising awareness is important for families and encourages anyone with health problems to get checked.