If your child was diagnosed with a terminal disease, would you spend their last days making memories or pursuing an unproven treatment? Kylie Matthews reports.
First published in the March 2018 issue of Marie Claire Australia.
Annabelle Potts with her mum, Katie.Photo © 2018 Pacific Magazines
It was Boxing Day 2016, and the Potts family were celebrating Christmas in the garden of a relative’s home when Kathie, 36, first noticed their three-year-old daughter Annabelle was limping. Quietly frightened, she glanced across the table at her husband, Adam, 34, expecting to be comforted by his usual calm reassurance. But, as Annabelle stumbled and wobbled towards her parents, Adam couldn’t mask his concern. That was the moment when Kathie knew there was something gravely wrong.
The alarm bells had already been ringing for Canberra couple before Annabelle’s limp appeared. Her speech had been slurred. She’d also begun to vomit and suffer from dizzy spells, disturbed sleep and troubling behavioural changes – but doctors had only unconvincing diagnoses to offer, from childhood anxiety to middle ear infection. It was all out of character for their usually sunny little girl. “Annabelle was having major meltdowns to the point I even had to her baby brother away from her because she was just so unpredictable,” Kathie says.
The limp was the final straw. The Potts sought a second opinion from another GP who immediately sent them to emergency. There, an MRI revealed a mass in Annabelle’s brain stem and further tests led to a devastating diagnosis: Annabelle had diffuse intrinsic pontine glioma (DIPG), an inoperable, highly aggressive and lethal type of brain tumour affecting children. Only one per cent of children with DIPG survive beyond five years old. None has made it to adulthood. “When I found out I was in total and utter shock,” Kathie recalls. “I asked the neurologist, ‘How long have I got with her?’ and he said, ‘With this type of tumour, we’re talking months’.”
Radiation was the next step, but nothing changed. Afterwards, sombre doctors delivered the terrible news: there was nothing more they could do. “Go home and make memories,” they told Kathie and Adam.
But the couple had no interest in sitting back and waiting for this cruel trick of nature to take its course. So, like thousands of families around the world, they turned to the internet – searching for anything that would give them hope. If Australian doctors wouldn’t treat their little girl, Kathie and Adam would research until they’d found someone, somewhere, who would.
The online DIPG community appeared to coalesce around a treatment facility in Monterrey, Mexico, called Instituto de Oncolgia Intervencionista where a little English girl named Kayleigh had seen her tumour shrink by 30 per cent. This, they thought, was the hope they needed.
“After we spoke to Kayleigh’s parents and they told us of her decreased symptoms, we were convinced to go,” Kathie explains.
But when Kathie and Adam told Annabelle’s Australian doctors of their intention to travel to Mexico for the controversial treatment, at a cost of $25,000 for each of the eight to 10 sessions, plus $135,000 annually for “maintenance”, their responses were less than encouraging.
The doctors and nurses weren’t supportive of us doing anything overseas because nothing [we were considering] has been scientifically proven to work,” she says. “Our oncologist told us stories of people who went overseas and lost everything. ‘If you get over there and something happens and she has to stay there on life support, that’s your whole life, savings, house gone,’ [they said]. I do think they were just looking out for us, but we were determined to try.
The Potts Family. Photo © 2018 Pacific Magazines
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The Potts’ story is not unusual. All over the world, parents of sick children are flocking to “medical hotspots” around the globe to attend clinics that treat DIPG and other conditions including cerebral palsy, autism and leukaemia. Such clinics are everywhere from Asia and Europe to Latin America and the Middle East. Parents want to buy hope for their children or, at the very least, a few more months of life, despite the fact that these clinics’ claims are untested and sometimes defy the wishes of the child’s treatment teams.
The choice for many families is clear – they will do anything to have their children with them for as long as possible. For doctors, armed with the facts and figures, the belief is usually that a family’s time and resources would be better spent on enjoying those last days with love and laughter, rather than on expensive and unproven procedures.
For the DIPG families who have turned to the Mexican clinic for treatment, anecdotal evidence of children’s symptom improving is enough to convince them that the expense and upheaval is worth it. They resent the implication from the medical establishment that they’re acting emotionally or irrationally. “We did so much research, [and] looked at the facts and figures before we went down this path,” Kathie says. “I’d never do anything to my child that I didn’t think could potentially help.”
Certainly Australia could offer very little of anything that looked like help. DIPG families are typically appalled that Australia and other developed countries offer so few options for treatment, and that the government spends so little money on trying to find better alternatives. Brain cancer funding accounts for less than five per cent of the money the Federal Government allocates to cancer research in total, despite 1200 Australians losing their lives to it each year.
Kathie and Adam reasoned that travelling to Mexico was the only course of action that might extend their little girl’s life while conventional medicine continued to search for more permanent solutions. “We hope to buy some time for Annabelle,” Kathie says, “and give Australia time to catch up ad come up with something.”
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Last year, the implacable tension between families and the medical establishment came to a head when British courts were forced to determine who has the right to decide on treatment for a dying child. British baby Charlie Gard sparked intense international debate after refused to allow his devastated parents to take him to the US to undergo experimental medical treatment for a rare, terminal condition called mitochondrial DNA depletion syndrome (MDS). In a Facebook post in July, Charlie’s parents, Chris Gard and Connie Yates, made their anguish plain. “If your child was ill and you had the choice of giving them a non-harmful medication that clinically had a 10 per cent chance of important improvement, would you take the chance? This is why we are fighting!”
Doctors at London’s Great Ormond Street Hospital insisted that the untested treatment would “prolong the child’s suffering” and argued that Charlie’s condition was unequivocally terminal. Others, including US President Donald Trump and the Pope, insisted on the autonomy of Charlie’s parents, who managed to crowdfund more than $2.14 million to cover the costs associated with his treatment. After two high-profile hearings, the Court ruled that Charlie’s life support be switched off and, on July 28 last year, little Charlie passed away.
Charlie Gard’s parents say goodbye to their son. Picture © 2017 The Daily Mail
“We are utterly heartbroken spending our last precious hours with our baby boy,” the couple posted on Facebook. “We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies.”
Australian Medical Association president Dr Michael Gannon says these issues play out in medical consulting rooms across Australia all the time. “What we see all too often is that doctors give patients or parents very good advice, but it’s not what they want to hear, so they’ll choose to seek hope in whatever form it comes,” he says.
Associate Professor Megan Munsie, deputy director of the Centre for Stem Cell Research at the University of Melbourne, who regularly sees families travelling overseas for untested stem cell “cures” says it’s the clinics who must be held accountable. “I don’t like to use the word ‘desperation’ because families who choose to take their children overseas for a particular treatment don’t make that decision lightly,” she says. “Instead, I criticise the providers who market themselves with questionable anecdotal evidence.”
Leading UK cancer consultant Professor Karol Sikora says the medical fraternity needs to be more flexible. He wrote in The Telegraph that while doctors have an obligation to warn patients of risks, they and their families should also be given room to deal with devastating illness in their own way. “For some, an odyssey like this is an essential part of their journey,” he wrote, “and we have to respect it.”
Doctors and scientists may be beholden to the logical gods of evidence and algorithms, he suggests, but sometimes they have to intuit the best emotional course for their patients, even if they believe the outcome will be the same.
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The Facebook pages set up to support the families of children with DIPG are filled with heartbreaking memorials to children who have lost their battles – smiling, brave faces of girls and boys, mostly under the age of 10. But every so often a good news story breaks through the devastation. Usually it’s descriptions of children’s tumours shrinking or their symptoms decreasing – at least temporarily – even if no-one can agree on exactly what made the difference.
In at least one case, there has been what could look like a miracle. In October last year, DIPG families went wild with joy; a little boy, Braden “Buddy” Miller, 8, from Michigan in the USA, was given the most incredible news. According to doctors at the Mexican DIPG clinic, Buddy’s MRIs appeared to show that his brain tumour had completely disappeared after just six treatments. Supporters were quick to respond, recording their jubilation on Facebook. “That is amazing news! There is hope!” was a typical post.
But stories like Buddy’s are the exception, and remain unverified beyond the families’ reports. The clinic in Mexico provides no statistics or data and won’t share its treatment protocol.
American child Braden “Buddy” Miller continues in his battle against DIPG. Picture: gofundme
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South Australian mum Hayley Keeping questions whether going to Mexico was the right decision, after her daughter, Alexia, passed aware last year after her own battle with DIPG. Alexia was first treated at a German clinic where doctors pumped vitamins into her body, supposedly to increase immunity and attack the tumour. Nothing improved.
“We were told she’d have around 12 months left, no matter what we did, but I still remained hopeful that we were going to find something. We just had to look harder,” Hayley says. “Even if someone suggested the most outrageous thing, I’d consider it. I was prepared to try anything.”
Mexico was next. By this point, Alexia was in a wheelchair and unable to speak. “Time was running out,” Hayley says. Alexia suffered terrible side-effects from the treatment. “But what other choice did we have?” After two months, the family returned home with Alexia showing little improvement. “We were hoping for some miracle to happen,” Hayley says.
Back in Australia, Alexia’s condition deteriorated rapidly. Her mother remembers her last day as one of purest heartbreak. “She was so sick and I was just holding her,” she says, her voice heavy with grief. “I asked her, ‘Do you want to go to the hospital?’ The only way she could answer me at that point was with her eyes and she moved them up and down, up and down. “Doctors could do nothing except administer morphine. “She wasn’t in pain anymore. I didn’t leave her side the whole time. It was the next evening; we were all with her when she took her last breath.”
Alexia was only five years old.
Five-year-old Alexia lost her battle against DIPG earlier this year. Picture: Hayley Keeping
It’s not hard to understand Hayley’s retrospective uncertainty. Many international clinics offering unconventional treatments have been unmasked over recent years, including one of Europe’s largest stem cell clinics, XCell-Center in Germany, which claimed to treat myriad conditions including diabetes, stroke and MS. The clinics was shut down after an 18-month-old boy suffered internal bleeding and died. Another, the Stamina Foundation in Italy, was shut down after authorities found it offered no medical benefits whatsoever.
The Mexico treatments have devastated Hayley’s family’s finances. “While Alexia was in the hospital [there], … it cost us around $8000 a day and she was there for two months,” Hayley says.
If she could go back in time, would she take the same path?
You do, she says, whatever you can to give your child the best shot at life. Anyone would. “Afterwards, there’s so much room to regret and blame yourself,” Hayley says. “As a parent, you’re bombarded with very serious medical decisions to make, which you don’t really know anything about, and you can only hope you’re making the right ones. There’s nothing available that can assure parents, especially when you’re racing for your child’s life against the clock.”
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For Kathie and Adam Potts, that race is one they’re determined to win. Annabelle has already been treated seven times in Mexico with a combination of chemotherapy ad immunotherapy that targets the tumour in a way that other treatments can’t. She suffers from high temperatures and headaches after each session, but Kathie says she’s beginning to bounce back quicker each time. At home, Annabelle’s Australian radiation oncologist confirmed that her MRIs did show some improvement – the tumour had shrunk slightly and become less active.
Annabelle is starting preschool soon, something she never could have done when her symptoms were at their peak, and she’s surpassed doctors’ initial prediction that she’d only live for nine more months. Her Mexican doctors are confident about her case. “They tell you they can’t promise you anything, but that they’ll try their best. And, at least they’re doing something. What’s Australia doing?” Kathie asks.
The family have now spent around $400,000 on the process in total. This includes generous donations from loved ones and strangers (they raise funds at gofundme/annabellepotts), a gesture they find “incredible” – however, they now have only enough to cover two more treatments. “We’ve been so blessed to have such a supportive community around us who not only give us love, encouragement and moral support but are financially making this Mexico treatment a possibility,” says Kathie. “Every cent spent is worth it to see my daughter meeting milestones and living a full and happy life.
“I could never just sit here and twiddle my thumbs and wait for my daughter to die,” she continues. “I don’t want to ‘make memories’ with my daughter, I want to live life with her.”
The Race for a Cure
In September last year, researchers at the Children’s Cancer Institute in Sydney reported that a drug used to treat malaria was having remarkable effects on DIPG tumours in mice. Scientists say that annual funding of $5 million is needed to continue their groundbreaking research, which may include human trials early this year. Visit ccia.org.au to donate.
© 2018 Pacific Magazines