Local Rotorua girl Lucia Joseph has had a traumatic and challenging 15 months since being diagnosed with osteosarcoma - an aggressive form of bone cancer. Photo / Andrew Warner
Lucia Joseph is a bright young girl with a strong sense of kindness and determination. She is quietly confident, loves her family and has a passion for being active.
Fifteen months ago life was “fun” for Lucia as she began her intermediate years at Mokoia Intermediate in Rotorua.
She was a “pretty normal little girl” who loved skateboarding, trampolining and gymnastics.
Then doctors told her she had cancer.
It has been a traumatic and challenging 15 months for 12-year-old Lucia and her family since being told at Auckland’s Starship Hospital that she had osteosarcoma, a rare and aggressive bone cancer.
Lucia has had 17 rounds of chemotherapy, a leg-saving reconstructive operation with donor bone from overseas, at least eight blood transfusions and seven rides in an ambulance.
Lucia’s cancer ordeal started after she felt pain in her right leg for about a year before her diagnosis. She noticed a lump that started to get bigger.
“The lump, my mum felt it and it was warm,” she told the Rotorua Daily Post.
Her parents thought it was a hematoma or growing pains but were still alarmed. They booked her in to see a doctor but before the consultation took place Lucia was at school on May 31 last year and planning to take part in a running race when she could not get up to walk.
Her parents got an urgent doctor’s appointment.
“I called my dad from school and he picked me up and took me to the doctor. They did an x-ray and a couple of days later they did a CT and MRI scan.”
The doctor told the family they needed to go to Starship Hospital in Auckland for a biopsy. The first biopsy was unsuccessful and Lucia was asked to complete a second.
The doctor did not tell Lucia his reasons for biopsy testing at the time. “I think my mum and my dad had a little bit of a hint that there was something bigger going on,” Lucia says.
It was a gruelling two weeks of biopsies and testing before Lucia received her osteosarcoma diagnosis - on her dad’s birthday, July 7.
Her first thought was she would lose her hair.
“The first thing that came to mind was I was gonna lose my hair because when you see a kid or someone with cancer, the first thing you notice is they have no hair most of the time,” she says.
“I had quite long hair. But then throughout that day, I learned that there was much more to cancer than what you see,” Lucia says.
Lucia was given a treatment plan four days later and started chemotherapy. She underwent Methotrexate, Cisplatin and Doxorubicin treatment. She said the Cisplatin and Doxorubicin were the “hardest” and made her feel nauseous.
She then had reconstructive leg surgery that involved an anonymous donor bone from the United States being quickly transported to Starship Hospital.
The surgery involved an incision from above the knee to the ankle removing the tibia and fibula bones and cancer tumour. The tibia was replaced with the donor bone and a metal rod screwed into the knee and ankle replaced her fibula.
She says she had not thought about having another person’s bone in her body.
“I’m just lucky to have my leg.”
Lucia had 36 metal staples inserted and skin grafts from her upper thigh to support the healing of the wound.
Lucia ended up in life-or-death situations in the back of an ambulance as a result of at least seven rounds of chemotherapy.
“The chemo ... completely washes away your immunity so you can pick up on any bug.”
Lucia also had to endure high temperatures of over 40C and a stomach bug and suffered a major setback when she broke the leg that had been operated on after falling in the shower.
The fall caused a crack in her right leg below the donor bone. This was mentally challenging for Lucia. Her mum described her bone strength after chemotherapy as “porous, like eggshell”.
She also received beads to mark her treatments and experiences. The Beads of Courage programme, according to the Child Cancer Foundation that provides it, recognises a child’s strength and courage during treatment. Each bead marks treatment or an experience such as chemotherapy, nights in hospital, blood transfusions or hair loss.
Father Dane Joseph says: “When you face a diagnosis like this overnight, your world is turned on its head.
“Even though you’re aware of cancer and you sort of have an understanding of how challenging [it’s] gonna be, nothing can prepare you for everything you have to deal with.”
He says Starship held a record of bone donors from across the world and Lucia’s bone got “shipped straight away” once she was diagnosed.
Her chemotherapy also started quickly.
“We barely had time to phone home and give family updates.”
He says Lucia was treated with “top shelf” and “platinum chemotherapy” because of its type.
“The chemotherapy erodes all your immunity and everything. There were times that it was life or death and that’s pretty scary. A lot of those times straight into hospital, straight into the emergency department.”
He says the 17 rounds of chemotherapy sounds like a number but each and every round was “an absolute ordeal”.
Lucia’s mum, Pia Joseph, says she would “jump down anyone’s throat” at the time if referred to her daughter’s cancer diagnosis as a journey because it was an “absolute ordeal”.
She had to quickly give up her job because of Lucia’s treatment. “I just had to ring my boss and say, ‘My daughter has bone cancer and I don’t know what that looks like but I’m not available’.”
Rotorua Lakes High School teacher and Rotary Rotorua Passport president Haley Hodge, who knows the family, said the family was “super resilient” and “really positive” and was thankful to the Child Cancer Foundation for supporting them.
Te Whatu Ora Starship orthopaedic surgeon Dr Andrew Graydon says on average there are about six new cases of osteosarcoma in New Zealand per year.
“The overall survival for children is about 80 per cent although this differs depending on various clinical factors.
“In most cases of children with osteosarcoma, it is possible to remove the tumour without amputating the limb. This is known as “limb salvage” and is the preferred method of surgical treatment where possible.”
Graydon says the process of reattaching blood vessels to a new bone in the body meant it could heal and grow in a new location.
“The benefits of this technique is that the transported bone will not only heal, it will grow and take on the characteristics of the bone it has replaced. This enables near full function once everything has healed, and the patient literally grows their own new bone.”
He says that at Starship the number of times this technique is used varies but is typically four to six times per year.
Lucia has now finished treatment and is in remission and recovering. She will have ongoing tests such as x-rays and CT scans every three months for the next three years.
Lucia will be speaking at the Rotary Club of Rotorua Passport on Tuesday, August 8 at 6.30pm at the Pig ‘n Whistle and will share her story.
The Rotary Club of Rotorua passport holds an annual one-night Art Exhibition Expressions 3 at the Pullman Hotel Friday, September 1, at 7pm to raise funds for deserving local charities or organisations. This year’s major recipient of proceeds will be the Child Cancer Foundation (Rotorua). Tickets are available from members of Rotary Rotorua Passport.
Lucia’s family thanks the staff at Starship, Ronald McDonald House and foundations such as the Cancer Society and Canteen for their continued support.
As for Lucia, she has a few more years of rehabilitation to go and hopes to return to gymnastics, skateboarding and trampolining one day.
“I will get a lot better,” she says, with a smile.
Michaela Pointon is an NZME reporter based in the Bay of Plenty and was formerly a feature writer.
Emergency services were called to the crash at 11.15am on Boxing Day