'I found a lump bathing my son but doctors took 12 months to diagnose it'

A mum who was rubbing moisturiser into her two-year-old son's skin after a routine bath instantly knew something was wrong when she found a small lump - but had to spend almost a year pushing doctors to help. Alexandra Hams, 40, from Sidcup in Kent, first noticed something was wrong with Rafferty in January 2023.

She went to see a GP and he was booked in for an ultrasound two weeks later. "Rafferty was sent for a two-week referral, following his ultrasound, and this appointment wasn't coming through quick enough," Alexandra said.

"I called the hospital and was told that the referral letter was sitting on a consultant's desk waiting to be reviewed. This was when we decided to go private to speed things up. The consultant we saw suggested I take him to AandE to get some quicker answers."

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While waiting for the results, Alexandra took Rafferty to AandE for another scan. She was told he had a benign tumour, but no biopsy was arranged. However, the lump kept growing, reaching the size of a grape, and Rafferty's family continued to seek an answer to what was wrong.

After months of more appointments, scans, tests and specialist referrals, with continued reassurances that the lump was benign, Alexandra trusted her mother's instinct and, feeling that something was really wrong, kept pushing for answers.

Rafferty had another ultrasound scan in November, followed by an MRI and biopsy in December. It was in late December 2023 that the results found Rafferty had a fibromyxoid sarcoma, a rare cancer Alexandra had never heard of, and he would need surgery.

It is a malignant tumour that develops in connective tissues like bone, muscle, fat and blood vessels. "I didn't know what sarcoma was at the time," Alexandra said.

"It took a whole year to get a confirmed diagnosis. I just felt like I couldn't rest, because I knew something wasn't right. It's a mother's instinct. Part of me felt quite relieved when we finally got a diagnosis because I felt as though I'd gone a bit mad in that year, pushing and pushing for answers, and there's only so much you can do as a parent.

"We put our trust in the system and when I felt it let us down slightly that year - if they had picked up on it a bit sooner, then it wouldn't have been a year of appointments. It was a mix of emotions but we were relieved that we had a diagnosis that was confirmed, and we could process it and deal with what was coming.

"It was the not knowing and going backwards and forwards and I don't feel like I rested until that point. We were heartbroken because he's so little and you automatically think the worst. We were utterly devastated and left to process the unimaginable but through the fear and heartbreak, we had to find the strength to focus on what came next."

In January 2024, Rafferty had an operation at the Royal National Orthopaedic Hospital in Stanmore to have his tumour removed. "The days leading up to Rafferty's surgery were filled with a mix of hope and anxiety," Alexandra said. "Those moments, though incredibly difficult, reminded us of the resilience we didn't know we had.

"It stuck with us for a while. I don't think anything like this ever really leaves you. At the hospital, you're seeing all of these children that are having chemo and what they're going through and it's heartbreaking.

"We felt almost guilty seeing what other families are going through, and you're suddenly in it. You have a feeling of 'oh my God, I can't believe this is happening to me'."

As Rafferty was undergoing his various appointments, he adopted a motto: "Be good, be brave, be strong". "He would say it to himself and it would make us really emotional," Alexandra remembers. Thankfully, the operation was successful and further treatment wasn't needed. Rafferty, now aged four, is under the care of The Royal Marsden Hospital where he has regular scans and checks.

Alexandra is now determined to raise awareness of sarcoma, and believes that if more people knew about the condition, it wouldn't have taken so long for Rafferty to be diagnosed. She's now running the London Marathon to raise money for charity Sarcoma UK, hoping to raise over £5,000.

"I want to raise awareness, because family members, friends, none of us had heard of sarcoma, and I just really don't think the word is out there enough," Alexandra adds.

"Running the London Marathon has always been a dream of mine, but I never had a reason so close to my heart, until now. Every step I take during training and every mile I run on race day will be for Rafferty, for other children and families battling sarcoma, and for hope - the hope that one day we will have better treatments, earlier diagnoses and perhaps even a cure.

"It's good to do something good and give back if I can. I also want to tell other parents to trust your gut, and to check your children for lumps and things, and if you're unsure, don't hesitate.

"At the beginning, I actually apologised to the doctors and said 'I'm really sorry, should I be here?' Don't hesitate if you're unsure. If you're worried about something, always check, and always go to the GP."

Kerry Reeves-Kneip, Director of Fundraising and Communications at Sarcoma UK, says: "We are deeply grateful to Alexandra for running the London Marathon and helping us support brave children like Rafferty. Rafferty's rare cancer journey reminds us why continued investment in sarcoma research is so vital.

"His story highlights the critical need for faster, more precise diagnosis. Rafferty experienced months of uncertainty before his sarcoma was identified – a delay that underscores the importance of our ongoing research to improve early detection and treatment that offer hope to families facing this challenging journey."

Donate to Alexandra's fundraiser here: