Dad runs marathon for GOSH after daughter's treatment

Hayley and Dean first knew something was wrong with Marnie last summer. She was running during an athletics class and they noticed it looked like she was dragging her leg.

Out of the blue, she started complaining when she was sitting down in her highchair or in her car seat.

“She kept saying ‘mummy my leg hurts’ and pointing to the part of her leg that was hurting,” Hayley explains.

A few months later Marnie was diagnosed with a rare condition called Langerhans cell histiocytosis (LCH). It was just a few days after her third birthday.

Langerhans’ cells are immune cells that help fight infection in the skin. When a child has LCH, these cells spread through the bloodstream to other healthy parts of the body where they can cause damage by overgrowing into tumours. Marnie had a tumour on her hip socket.

LCH is usually treated by cancer specialists. This is because chemotherapy works well in the treatment of LCH.

Doctors told Hayley and Dean that Marnie would be treated by the Oncology team at GOSH.

During Marnie’s first appointment at GOSH, Hayley and Dean learnt more about LCH.

"We basically worked out that the white blood cells go into overdrive and attacks the body and forms tumours," Dean says. “Marnie only had a single site, so a tumour in one area in her hip. We were grateful it wasn’t anything too sinister and looking at the outcomes it was treatable.”

Marnie was a patient on GOSH’s Safari Ward. Her treatment was the mildest form of chemotherapy. She had to have an operation to have a portacath (port) fitted to administer the medication and check her bloods. She also had to have steroids, which ran alongside the chemotherapy.

“The side effects weren’t great to be honest,” Dean recalls. “Her chemotherapy went from weekly to three times a week from August 2021 to February 2022.”

After around six months of chemotherapy, Marnie had a scan that showed she was responding well to treatment. The tumour had gone and her doctor was pleased.

“You could still see the bone damage, but that takes a long time before the scans will show fully repaired bones,” Dean says.

In July 2022, Marnie rang the end of treatment bell.

“It could easily have been the happiest day of my life,” Dean says.

Initially, Hayley found the idea of Marnie at GOSH a bit daunting, but once she arrived it didn’t feel like a frightening place.

“…From the minute you’re under (GOSH's) care you’re part of their big family and you’re looked after,” she explains. “Making the kids as comfortable, happy and as well as they possibly can be is top of their agenda."

"You meet other parents who are in exactly the same boat as you. It’s a safe space for the whole family, for parents, siblings. It doesn’t feel like a hospital,” Dean says. For him, it feels like a “happy place”.

“The first time you go there, it’s gut wrenching as you see a lot of very poorly children, but they’re all happy. It’s a credit to the people that work at GOSH more than anything."

While at GOSH, a counsellor was there to help the whole family.

“It just felt like you were having a chat with someone, so felt therapeutic in that way,” Dean explains. "You didn’t feel judged and could have those honest conversations, rather than perhaps telling people the ‘right answer’ so to speak.

“We thought Marnie had some kind of anxiety issues and again (the counsellor) worked with us and the Play team to monitor these through play, which is absolutely brilliant.”

Throughout her time at GOSH, Marnie loved spending time with the Play team.

“She strolls onto Safari, and they all know her,” Hayley says. “It’s ‘what toys am I going to play with today?’ and they get them all out for her…When she’s with them, she’s happy.”

This October, Dean will be running the London Marathon for GOSH Charity.

“I’ve always wanted to run the marathon. It’s a vocation in life and I’m 40 years old in January 2023, so it felt like the right time,” he says.

Throughout training and on the day, Marnie will be his inspiration.

“… running 26 miles is nothing compared to what she’s been through,” he explains.

“We were thinking of getting Marnie’s pre-school involved in the fundraising” Hayley adds. “And also, my school in doing a cake sale!”

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What do Dean and Hayley want for Marnie’s future?

“I just want Marnie to enjoy life. The world is her oyster,” Hayley says. “She’s a very intelligent little girl and everyone she meets absolutely loves her. She’s such a little character and I just want her to start school in September and make friends and not feel any different to the other kids. I just want her to have the life that she deserves. She’s been through enough and I don’t want her to have any more heartache. I just want her to be a normal little kid really!”