Boy’s large vein turns out to be rare cancer which needs over 2,200 medical procedures

A boy who was diagnosed with a rare type of cancer at the age of three has endured 2,244 medical procedures in three years.

Little Seb, of Tring, Hertfordshire, has undergone intensive chemotherapy which began on his fourth birthday after being rushed to hospital when he went off his food and began shedding weight.

He got repeat infections, which doctors initially put down to coming into contact with new children at nursery, but after a bold vein appeared running from his neck to his groin mum Claire Boulter took him to A&E.

Tests found a tumour in his chest and in February 2019 he was diagnosed with the blood based cancer, T-lymphoblastic lymphoma.

The grueling treatment resulted in muscle wastage in his legs and swelling in his body, completely transforming the once-active toddler.

But now, after three years of treatment, Seb is cancer free and back at school.

Mum Claire Boulter said: “It’s the words that no parents want to hear, ‘your child has cancer’. It was a huge shock and very distressing to see our active little boy go into that world.”

She described the first year of treatment as awful and a very distressing experience.

However, the family were grateful that treatment for their son’s type of cancer existed.

She said: “The chemotherapy was so brutal and could possibly have long term effects, but we are grateful that any treatment existed at all for his type of cancer.”

During his time in hospital, Seb and his family began collecting what he refers to as his ‘beads of courage’. Each bead represents one procedure. Seb now has 2,244 beads in total.

Seb finished his treatment on Friday, June 24 after beating his long battle with cancer.

He is now back at school, playing football and enjoying all of the things that a little boy should be doing.

“He is such a determined little boy already and we can’t wait to see what happens when he’s not on chemo,” said Claire.

In a bid to celebrate the end of his treatment and to say thank you to the immense support received from family and friends, the family are throwing a ‘Seb Fest’ party.

As Seb’s story circulated, the family were asked how people could support Seb Fest financially.

The family decided to set up a GoFundMe page to raise money for three charities who have supported them throughout their journey with cancer and who continue to help thousands of other families battling the disease.

The three charities are Blood Cancer UK, Team Mikayla and Children’s Cancer and Leukaemia Group.

Praising all three charities for their incredible work in helping families across the country deal with cancer diagnoses, Claire told HertsLive that thanks to Team Mikayla, Seb was granted his wish of having a sleepover at Legoland.

Additionally, Blood Cancer UK undertook extensive research into Seb’s specialised treatment.

“His treatment plan wouldn’t have existed without them,” said Claire. “Without these charities, families really struggle. It is a really isolating time. Families need the support of these charities as well as family and friends.”