Boy, 9, left with a limp after a fall – but it was a sign of hidden killer cancer

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Alison Biggs knew something wasn’t right when her nine-year-old rugby-loving son Frankie cried after falling over in the back garden.

But she never imagined the incident in July 2015 was the first sign of the cancer which would take him from her just two years later.

“Frankie’s nickname was Frank the Tank, which he got from rugby because he was so strong no one could pull him to the ground,” says Alison, now 42.

“He never moaned about anything and he never got upset – so for a fall to bring him to tears was quite something.”

After the fall Frankie developed a limp, so his mother took him to their local surgery, where she was told he had ligament damage.

Frankie saw four GPs over the next nine weeks and was eventually referred for physio. Alison says: “I was told he had to have three sessions before they would even think about an MRI, but when I caught him coming down the stairs on his bottom as his knee hurt so much I decided enough was enough.”

Frankie and brother Alfie
Frankie and brother Alfie

 

She took him straight to their local hospital in Epsom, Surrey.

“Again we were told it was ligament damage but I refused to go anywhere until they gave him an X-ray,” she says.

“Finally a doctor said, ‘If this child has been walking like this for nine weeks, it must be checked’. From that moment, everything was on fast forward.”

The X-ray revealed Frankie’s kneecap was broken. “They took blood – though I couldn’t work out why they needed to – and put his leg in a cast,” says Alison.

“Next thing we knew, they were cutting the cast off for an MRI – and by early evening my husband Lee and I were told it was cancer.”

Frankie had osteosarcoma, the most common type of childhood bone cancer, and the tumour in his left leg had broken his knee cap in half.

By the time it was discovered, the disease had spread to both knees and he had 20 small tumours in his lungs.

“We were mortified,” says Alison.

“How do you tell a nine-year- old child he has cancer? The doctors asked if he had been unwell or developed bruising or if his lymph nodes were up.

“But Frankie was so active and hadn’t shown any signs. It was so shocking. It still makes me go cold just thinking about it. I hadn’t thought for a second it would be cancer.”

With dad Lee after his leg operation

Frankie started chemotherapy at the end of October, just before his 10th birthday, and in January surgeons removed half the bone from his thigh down to the middle of his shin and gave him a bionic leg.

“He was going to be the first child in Surrey to have two bionic legs but unfortunately his first round of chemo hadn’t worked so, instead of the next op, he had to start much more aggressive drugs to stop the tumours spreading.”

The second course was more successful and by May 2016 the family was hopeful. “Frankie only needed monitoring with CT scans every couple of months and they said everything was looking good,” says Alison.

“But osteosarcoma is very clever and things went downhill very rapidly.”

Just before Christmas 2017, Alison was getting older son Alfie, now 13, ready for school and heard Frankie coughing.

“I went to check on him. There was blood everywhere. A tumour had burst a blood vessel in his lung,” says Alison.

The lower lobe of Frankie’s left lung was removed, but a week after he came out of hospital the family was dealt another blow – he had a seizure and a scan revealed the cancer was in his brain.

Frankie, on the right, with his family

Alison says: “When Great Ormond Street sent their palliative care team to see us I knew it meant they thought it was the end. But I was so stubborn I still wanted to try to beat it, so we started treating him with cannabis which Lee had spent weeks researching,” says Alison.

“It didn’t cure the cancer but it worked brilliantly as pain relief. The one thing I can take from the whole experience is that Frankie didn’t die in pain.

“After the lung operation he made me promise not to send him back to hospital.

“The GOSH team left us with three boxes of drugs, but Frankie didn’t need any pain medication because of the CBD treatment.

“Osteosarcoma is a brutal condition and we watched other children passing out in agony and being pumped with ketamine which didn’t even touch the sides. But Frankie remained very chilled and relaxed to the end.

“The night he passed away, on January 31, 2018, he had multiple fits and we realised he was bleeding internally.

“I managed to knock him out with anti-seizure medication GOSH had left for us and said to Lee, ‘Phone for an ambulance, I can’t do it any more’.

“Frankie died on the way to the hospice. He was mad about cars and it’s what he would have wanted – to go out driving at 100mph with blue lights flashing.”

Seventy-five children and teenagers are diagnosed with osteosarcoma a year and the disease, lagging behind other cancers in terms of new treatments, has been prioritised by the National Cancer Research Institute.

The overall five-year survival rate is around 50% due to a lack of research investment.

“They say osteosarcoma is rare, but I’d see a different child in the hospital every week. And over two years we watched six kids we became really close to pass away,” says Alison.

“After Frank died we wanted to do something in his name and a family friend helped get Children With Cancer UK and the Bone Cancer Research Trust in the same room.”

In memory of Frankie, the two have joined forces to advance research into osteosarcoma, bringing together 60 research scientists worldwide.

“It will be Frank’s legacy,” says Alison.

“I read every year people donate £38m to a donkey charity in Devon, but so many children are dying it can’t be right.

“I want my son’s name out there as it might make people give to childhood cancer research instead. Hopefully we can start to save lives.”

  • To donate or find out more visit childrenwithcancer.org.uk or bcrt.org.uk

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