'We were told she would never walk': Grace was eight months old when doctors found a massive tumour near her spine

Grace Holmes was just eight months old when her mum Brooke realised something was wrong.

"When she was a baby she would try to stand on a surface, but then she just stopped," Brooke recalled to 9honey.

"She was barely using her legs and she was not trying to crawl, she was just using her arms to kind of drag herself."

The first-time mum, who shares Grace with husband Jock, decided to take her to the GP, who arranged for her to see a paediatrician the very next day.

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They immediately sent Grace for an MRI in Toowoomba, about an hour from their home in Kincora, in rural Queensland.

"They stopped the MRI midway through and pulled us into a little consulting room and said they had found a cancer-like mass in her chest."

A massive 9cm by 7cm tumour was putting pressure on Grace's spine. Their paediatrician told them to drive straight to Queensland Children's Hospital in Brisbane.

"It was a Friday, September 22, 2023. We left the hospital in Toowoomba at about 6.30pm and arrived in Brisbane at about 8.30pm to 9pm."

Doctors were expecting them. They ran tests and conducted X-rays, before Grace was admitted to the oncology ward in the early hours of the next morning.

"That is when it really kind of hit us. Up until then they had not actually said it was cancer," Brooke recalled.

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Doctors suspected Grace had neuroblastoma, but could not be sure until they took a biopsy. She was rushed into theatre that same day for surgery to remove the part of the tumour that had grown into her spine.

"It was too large to remove but they took away enough just to take the pressure off her spine and spinal cord," Brooke said.

"We were told due to the spinal compression it was unlikely that Grace would ever walk."

After an agonising 12-day wait, doctors confirmed Grace had stage four intermediate risk neuroblastoma.

Neuroblastoma is the most common solid tumour found in children. Children aged up to five years old are most likely to be diagnosed with the disease, which grows in immature nerve cells within the sympathetic nervous system.

"We were lucky it had not spread into her bones or blood and it was not high-risk. That was the silver lining."

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Doctors recommended she begin chemotherapy the next day.

The family moved into an apartment owned by Childhood Cancer Support where they met other families whose children were battling cancer.

"There were five or six units. It was like a little village. It was nice to be able to talk to other people who are going through it who understand it because no one else does."

Grace received eight rounds of chemo over five months. At times, she required blood and platelet transfusions.

Meanwhile, Jock travelled back and forth to work on the family farm.

After Grace underwent her second round of chemo, an MRI showed the tumour had shrunk by about 50 per cent.

"By cycle five, it had stopped shrinking but we continued with the remaining three cycles, then she was booked in for surgery to remove the tumour.

"The surgery went pretty well. They removed as much of the tumour as they could – about 95 per cent – and they were pretty certain they removed all the cancer cells."

But doctors were unsure if Grace would ever be able to use her legs.

"After Grace's surgery, we were told that is was unlikely that she would get movement back, so essentially no movement in her legs," Brooke said.

"It was a crushing moment."

The neurological team visited Grace each day and performed tests to check for feeling and movement.

"Every time they came in my heart would sink," Brooke said.

About a week after a second surgery to repair a damaged thoracic duct, Grace was discharged from hospital and a week later, her central line was removed before she rang the bell to signify the end of treatment, and the family was finally able to return home.

About two weeks after the surgery, Grace moved her legs, something Brooke describes as a miracle.

"As time went on, her movement increased," Brooke said.

"Eventually she was able to bear weight on her legs, crawl, pull herself up and then started to walk."

Now two, Grace is cancer-free but returns to hospital for three-monthly check-ups and six-monthly MRIs, however doctors are confident the cancer will not return.

She recently became a big sister to Lucy and shows very few signs of her battle with cancer.

"She is great. You can hardly tell what she has been through," Brooke said.

"She is very active and bright, and full of energy. Her right leg is still weaker than her left because of the damage to her spine.

"She still sees a physio for her leg and her spine, and there is a chance she will get scoliosis."

The couple knows how lucky they are.

"We know a couple of little kids that have just passed away from neuroblastoma," Brooke said.

"One was staying with us at Childhood Cancer Support and the other one was in hospital [with Grace]. You do get that survivor guilt."

It is this, and the knowledge that the chemotherapy that saved Grace's life puts her at greater risk of developing blood cancer down the track, that prompted the couple to get behind Brisbane's Run2Cure neuroblastoma on August 10.

Similar events take place in Sydney and Melbourne throughout the year.

The Brisbane event hopes to raise $150,000 to fund research to find new, more effective and less toxic treatments for the disease that claims the lives of more children under the age of five than any other childhood cancer.

"We have got a big group of family and friends, close to 30, who are heading down to Brisbane this weekend to take part in everything from the 1km to 21km events," Brooke said.

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