WHEN she noticed her daughter couldn’t swallow, Joanne Reed knew something was wrong.
After taking her to hospital doctors diagnosed Jessica with tonsillitis and gave her Calpol to take.
But, the 11-month-old continued to get worse.
Eventually further tests revealed little Jessica was battling a very rare form of cancer, making her one of only five youngsters across Europe to be diagnosed with the tumour.
Doctors diagnosed an extremely rare rhabdoid tumour, and warned Jessica’s parents she had a 20 per cent chance of surviving.
But, after an operation to remove the tumour, little Jessica defied the odds, and finished her treatment in 2014.
Now her mum, is running the London Marathon to raise money for kids cancer charity CLIC Sargent, which helped the family through the horrible ordeal.
Recalling to day she knew her daughter was ill Joanne, 43, said: “The doctors just said it could be tonsillitis and we gave her some Calpol.
“We ended up going back and forth to the doctors.
Brave mum posts graphic daily photos of her face as she battles skin cancer which ‘ate away’ at her forehead
“The problem was because Jessica was only 11 months old, she was too little to tell us what is wrong.
“I just knew something wasn’t right, it must be that parental intuition that people talk about.
“She just wasn’t well, not herself at all.
“She went from being a really well child to being very ill so quickly.
“One day, I just couldn’t take any more and said we aren’t leaving the hospital until we find out what’s wrong.”
Tests revealed that there was two centimetre build-up of fluid around Jessica’s heart, which left her struggling to breathe.
The family, from Chelmsford, were taken by ambulance to Great Ormond Street Hospital under blue lights.
There, doctors sedated Jessica and operated on her to remove the fluid.
Medics then performed a CT scan, which revealed her tumour.
It was so large it had caused one of her tiny lungs to collapse and was cutting off vital blood supply to her heart.
Doctors had no choice but to operate again to remove the tumour, but warned there was only a 20 per cent chance of survival.
Joanne added: “The operations were risky – we were told if we do this she might die, but if we don’t she will die.
“You are making impossible decisions but we didn’t have a chance to dwell on anything.
“It all happened so quickly.
“It’s a very difficult time and until you’ve been in that situation you’ll never know what it feels like.
“So we just lived hour by hour.”
The operation was a success and the surgeons removed the entire tumour.
Joanne recalled: “No one breathed when the consultant came back in the room afterwards, the news was an unbelievable relief.
“Getting a cuddle after she’d woken up was an unbelievable feeling, it was a cuddle I’d never thought I’d get again.
What is rhabdoid cancer?
Rhabdoid cancer is a rare childhood tumour that commonly starts in the kidneys but also can occur in other soft tissues or in the brain.
Malignant rhabdoid tumours occur most commonly in infants and toddlers – the average age of diagnosis is 15-months old.
Cells from malignant rhabdoid tumors in children can spread (metastasise) to other areas of the body.
Cause:
There is no known cause for the cancer, but a gene called SMARCB1 may be linked to it.
Researchers have previously found that that specific gene is mutated in nearly all cases of rhabdoid cancer.
Treatment:
Treatment can involve a range of different therapies, depending on the person’s individual case.
But because the cancer is rare and aggressive, there is no defined standard of care and treatment options.
Patients may require surgery, chemotherapy or radiotherapy.
Source: Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
“We hadn’t been able to touch her for three days, I honestly don’t remember eating anything in those days.”
Just a few days later on her first birthday Jessica was taken off the ventilator and the family had a small party on the ward to celebrate.
But the day was marred when the test results of the tumour came back and doctors discovered it was a rare rhabdoid tumour.
Jessica’s parents were told she would have to undergo more intensive treatment to make sure it didn’t come back.
Joanne added: “When you are told ‘your child has cancer’ it’s the worst thing in the world, it feels like the rug is swept away from under your feet.”
Jessica underwent seven rounds of chemotherapy every fortnight at Great Ormond Street Hospital and received an autologous stem cell transplant, which uses the patient’s own stem cells to replace cells that have been damaged by high doses of chemotherapy.
Jessica finished her treatment in September 2014 and has had regular scans to monitor her condition ever since.
But the family is now in unchartered territory as no child with this type of tumour has made it this far without a relapse.
Throughout what Joanne describes as ‘the most hideous time in their life’ she and her family had support from a CLIC Sargent social worker.
She added: “It was amazing to have someone in your corner.
“She told us about all the financial help we could have and it sometimes it needs someone else to say ‘You’re entitled to it because you are in this position’.”
Now Joanne is determined to give something back by running the 2017 London Marathon for the charity.
She said: “It’s going to be a big challenge – I’m not a runner at all but ever since I was a kid I’ve watched the Marathon and until now I’ve never had a reason to get off my backside and do it.
“There’s no way we can repay CLIC Sargent for what they have done but I hope this goes someway to help.
“It’s really hard when it’s cold outside and you’re tired but then I look at Jessica and think that’s why I’m doing it.
“She is my reason to get out of bed in the cold and go running. I hope Jessica will be there to see mummy crawl across the line and I’ll give her a massive hug.”
To donate to the cause you can visit Joanne’s Just Giving Page here.
Leave a Reply