Mother of toddler with rare cancer urges parents to 'trust instincts' and seek help

February 12, 2021

A mother whose 16-month-old son was diagnosed with a rare cancer has set up an Instagram account to document her son's treatment and raise awareness.

Amy Smith, 31, made many trips to local doctors and the Royal Leicester Infirmary before she was told her son Storm had been diagnosed with rhabdomyosarcoma.

Rhabdomyosarcoma is a type of cancer that develops in soft tissues like muscle, or in hollow organs such as the bladder, uterus or testes, and most often affects children.

Amy's Instagram account documents the honest realities of her child living with the cancer, his symptoms and course of treatment.

Since it was set up on Tuesday 2 February, the mother-of-four has tried to raise awareness around the disease and encourage others to "trust their instincts" when it comes to seeking help for their own children.

She said: "I did the right thing by not leaving [the hospital] and trusting my gut. Something was telling me 'do not go home'… If I hadn't have pushed it, I still might not know."

Storm is now undergoing nine rounds of chemotherapy as clinicians try to reduce the size of the tumour with Amy being told "there's no guarantee he's not going to be infertile".

Amy admits that the way Storm's dealt with his treatment has helped her cope with the situation adding: "If I can stay strong, he can sense that and stay strong, and we'll take each day as it comes."

Despite deleting her social media accounts to focus on Storm's health, Amy says the Instagram blog has helped as people show support and share her story.

Explaining why she set up the blog, she said: "I trusted my instinct and people may not play on that. So if they see by me doing that, that's helped Storm… it could encourage them to help their child if they thought something wasn't right."

The training beautician has also had great support from Levi, an ADT driver, and her three other children Riley, 16, Rome, 12, and Haelo, five.

Discussing the cancer, Dr Ravi Jayaram - a consultant paediatrician at the Countess of Chester Hospital - said: "Rhabdomyosarcoma accounts for around 3 to 3.5% of all childhood cancer.

"Studies suggest around 100 cases per year in the UK, so it's not very common.

"As a general paediatrician who sees children with all sorts of things, from the ages of 0 to 16, day in day out, it's not something I'm going to see very often. Maybe two or three times in a career."

Amy said Storm had been doing well in his treatment, remaining "happy and chilled" throughout, as she rewards him with chocolate after his chemotherapy sessions.

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