TUMOUR BATTLE
Mum tells of search for alternative solutions after toddler’s brain tumour diagnosis
ON TUESDAY, May 4, Aria Hodgkiss’ family should have been celebrating her third birthday. Instead, they were given the devastating news that the toddler had a rare and deadly brain cancer.
Aria, from Wrexham, has a tumour in her brain known as a Diffuse Intrinsic Pontine Glioma (DIPG). It is inoperable and does not react well to chemotherapy.
Only 40 children in the UK are diagnosed with the condition each year. The average life expectancy is just 9 months after diagnosis, with only 1% of children surviving 5 years after diagnosis.
Recalling the lead up to Aria’s diagnosis, mum Melanie, 40, explained that in September last year her daughter had started to become “really clumsy” and kept “falling over her own feet”.
At the time Aria’s paediatrician put her clumsiness down to her being born prematurely, or possible cerebral palsy. In the meantime he referred her to physiotherapy.
But by November, Melanie noticed Aria’s walking had deteriorated and she was starting to crawl everywhere. By the end of December she had stopped walking completely.
A few months later, Aria’s eyes started shaking from side to side and her left eye had turned inwards to her nose. Aria was referred to the hospital’s ophthalmology department, but tests didn’t find anything.
However Melanie’s instinct prompted her to raise her concerns with the physiotherapist, who referred them back to the paediatrician.
“I said I’m really, really concerned now – something’s really not right. She needs an MRI,” said Melanie.
A scan on April 23 revealed a tumour on Aria’s brainstem and a very large amount of fluid. She was transferred to Alder Hey Children’s Hospital in Liverpool.
“The doctors at Alder Hey didn’t know how she was still so active. They said that she shouldn’t be this active with the amount of fluid that’s in her brain,” Melanie said.
“They put a shunt in Aria’s brain two days later to drain the fluid. That goes in from her brain to her stomach constantly – it’s there all the time to stop any build-up. And then on 28th April they did a biopsy.”
The biopsy results a week later confirmed that Aria had DIPG. Doctors said she could receive radiotherapy, but advised the family to “make memories” because she would pass away within nine to 12 months.
The NHS offered Aria an intensive three-week course of radiotherapy in June to reduce the tumour, so Melanie has desperately tried alternative solutions.
The three-year-old is currently taking THC (a compound found in cannabis), a liquid gel with anti-cancer properties, and a new cancer drug known as ONC201 – costing thousands of pounds.
Thousands have been raised by crowd-funding so far for the little girl, but there is still a way to go before the £20,000 goal is reached.
Following the heart-breaking diagnosis, Melanie said she was “on Google day and night” and found hope reading about the experiences of other children online.
“I wouldn’t stop until Aria was on everything possible so that she could go on,” said Melanie.
“We were devastated. I was having days where I was thinking the worst and I still do have those days. But we just stay positive now.”
She continued: “You find forums on Facebook everywhere of families going through the same thing, and that’s how I came across different things and different people.
“There are cases out there where the kids are still going two, three, four, five years later.”
She added: “There’s a girl in Australia – she’s still going five and a half years later. She’s had no radiotherapy. She’s on a list of things like herbal oils and THC. She’s still going. She’s not walking but she’s still active – as in, she’s crawling.
“We followed this little girl to see how she’s doing. All the oils that she takes, Aria takes. We found a doctor on Harley Street that would prescribe us THC. Aria started on that before anything the NHS gave us.”
Aria began THC two weeks after her diagnosis.
“It’s £150 a bottle and that lasts about a month. Plus you pay for the prescription, which is £40. Plus you pay £60 to speak to the consultant for ten minutes, and the consultant speaks to you every three weeks.”
Aria also takes a liquid gel derived from a sea cucumber – which is free and comes all the way from New Zealand – that is believed to have anticancer properties.
But Aria’s most expensive treatment is a new cancer drug from Germany, which she has been on for five weeks.
“It was invented for adults with epilepsy, and it got discarded because it costs too much to make,” explained Melanie.
“There have been a lot of trials in America where it’s had success in children with DIPG. For some children it’s just reduced [the tumour] so they can live a normal life. There are cases where they’ve gone into remission completely. There’s only three of them in the world.
“It’s a drug that stops it from growing. DIPG is like an octopus. It sort of grows legs and arms, it grows into everything. It’s not a hard mass – it’s like jelly. That’s why it’s impossible to get rid of.”
Melanie says they have had to pay at least £4,000 a month to get the medicine.
“We speak to the doctor [in Germany] on zoom call. That costs us £750 for 40 minutes. He prescribes it to us and then he sends the prescription to a private pharmacy in Germany, and then we pay them.”
Aria’s next MRI is on September 24, which will determine whether the doctor ups her current dosage.
The growth of the tumour appears to have responded well to the various treatments. Aria is now walking, her eyes have stopped shaking and Melanie says “she’s getting strong by the day”.
But the oncologist in Alder Hey Hospital warned the family it could come back more aggressively.
“If you read about other children that have passed away, after radiotherapy it comes back with a vengeance, and that’s what kills them unfortunately,” said Melanie.
Speaking about the impact Aria’s diagnosis had had on the family, Melanie said: “It’s turned our life upside down. What was important before is not important now.
“You live for each day. So instead of before, when we were worried about what was going to happen next week, you now think about today. And as long as Aria gets up today and she’s OK, then we’ll carry on.”