Makayla said of her diagnosis, “Breaking my leg was a good thing and a bad thing. It was a good thing because if I didn’t break my leg we wouldn’t know about the cancer. But it was also a bad thing to break my leg and to have cancer.”

Dad Wayne flew home from Queensland, where he had been away for work, the very next day. Makayla spent the next 10 days in Canberra Hospital getting a range of scans and biopsies and other tests. She was kept in a temporary back slab cast throughout this process to support her leg.

This was the start of what was to become a 2-year process to treat the affected leg and remove the cancer.

“They referred us to an orthopaedic surgeon on Sydney, and everything just ballooned from there,” said Claire.

In Sydney the doctors were unsure which way to go as Makayla was still young, and the cancer had grown quite large. Adamantinoma type cancer doesn’t react to chemo or radiation therapy, leaving surgery to remove the tumour as the only option.

The initial plan was to remove the tibia in the left leg and replace it with the fibula, but she needed to be a certain height for there to be enough bone to graft onto. This procedure would leave her with a weakened leg due it not being supported by a structural bone, and therefore requiring crutches or having a limp long-term.

Claire said of the process, “We’ve got to stretch you Makayla, you’ve got to grow because we need that extra height to you.”

During this time of waiting Makayla spent 16 weeks in a full leg cast as the break wasn’t able to heal. She was constantly changing casts and managing sores to her heel and leg by cutting out sections of the cast to apply creams each day.

In January 2022 an Orthopaedic surgeon in Sydney, Dr Maurice Guzman, preformed a Left tibial biopsy curettage and grafting plating. This consisted of a small incision with a small plate put in with six pins and required physiotherapy afterwards.

“They said when I grow, the tumor also grows with the bone,” Makayla stated.

Makayla had 12 months of physio leading up to her surgery to strengthen her legs and arms for the crutches. When the waiting, and growing, was over and they were referred to Westmead. By this time they decided to try a new strategy, harvesting the fibula on the right leg to bring into the left leg. This required surgery for Makayla on both her legs.

Over 9 hours the medical team removed the left tibia and took it to Westmead Hospital to irradiate it in a way that kills off the bone, and the cancer. The next step was to take the right fibula and thread it into the irradiated tibia and then pin it back into the left leg. The idea is that over time the fibula will fuse into the old tibia to give it the strength of a structural bone.

Makayla pointed out humorously, “I was in two hospitals at the exact same time. I was in one hospital and my bone was in the other!”

Post-surgery Makayla had a big cast on one leg and the other all wrapped up. Needing to have both legs raised meant that getting into her wheelchair was challenging at first. Makayla was motivated by super screen video games in the Starlight room.

"For accessibility, Dad Wayne had to redo our house by building a ramp and readjust the bathroom. Claire said this about Makayla's time in a wheelchair: "Thank God he was already handyman."

Makayla has more recently spent time in a brace to let the scar heal up. Her progress in physio has meant that she is now able to bend her knee and can have the brace off too. She is under regular monitoring to ensure the cancer hasn’t made it into the soft tissue, and the medical team are confident that it has been removed.

“Now I’m cancer free which is the really good part!” exclaims Makayla.

Makayla had to stop a lot of activities over the past two years during her treatment like swimming and karate. She has also had to have a lot of time off school and is looking forward to getting back when school resumes this year.

“Her school has been fantastic with everything, they have accommodated up to surgery and moved the classroom for accessibility, and she spent a lot of time in the library with buddies in breaks. COVID made it more challenging when her year group was far away from the library where she spent most of her time.”

“I’m missing all my friends because I can’t go out for a very long time otherwise my legs get sore.” Makayla found even visiting friends at their homes challenging as she had to negotiate using a wheelchair for much of her recovery.

The doctors believe that as she heals that she should be able to walk without a limp but won’t be able to go back to her Karate or contact sports but will eventually be able to go back to light running and things like that. Physiotherapy helps with issues relating to her foot and toes after not being used much.

As her surgical scars heal Makayla looks forward to getting into the pool for hydrotherapy which is easier for her with less weight bearing on her legs.

“I’m happy that I’ll be able to do swimming, because I love the pool!”

It’s been a lot for her to take in, already living with anxiety and ADHD meaning she is more likely to take everything to more of an extreme than otherwise. Claire and the family are building up her confidence again.

 “When I was diagnosed mum started a scrap book with all these pictures,” Makayla states proudly, showing the scrapbook and talking through the photos of stages of her treatment.

Claire spoke of the book fondly saying, “with each step that we have taken Makayla has been able to look back and see that she got through that, so knows she can get through what’s next”.

Makayla’s siblings Charlotte (9) and Caleb (15) were busy being helping hands when she needed them and keeping her childhood normal with all the usual sibling torment.

“It was very hard on them. Caleb understood and wanted to know everything that was happening. Being a teenage boy, he would hold everything in until the last moment and then it sort of hit him and that was pretty hard. Charlotte didn’t really understand what cancer meant and comprehend beyond that Makayla was sick.”

Recently Caleb came home and excitedly announced to the family that Relay For Life is on and that the family would have to do it!

Claire, who herself was born with Neuroblastoma, in 1982, while Claire’s mother Kerry was giving her a bath during a family vacation, she observed prominent veins in Claire’s chest and a dark blue ring around the top of Claire’s right arm and elbow.

A doctor in Taree subsequently referred Claire’s parents to a paediatrician in Canberra. On the Friday, X-rays revealed that Claire had a mass on the right side of her chest. By Monday, Claire was at Camperdown Children's hospital. There, Claire’s parents were informed that Claire had a rare form of Neuroblastoma. A few days after Claire’s first birthday, she underwent surgery to remove as much of the mass as possible. Claire then began both radiotherapy and chemotherapy. In 1996, during one of these check-ups at Westmead Children’s Hospital, Claire was diagnosed with Thyroid Cancer and underwent a total thyroidectomy at Royal North Shore Hospital.

Makayla has never been to Relay For Life event before and is very excited to do it this year.

“I’m excited to do it! Relay for life is raising money for really good stuff”.

Photo courtesy of Kerrie Brewer, Canberra Weekly