Cannabis kids: the long wait for change
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Cannabis kids: the long wait for change

Across Australia increasing numbers of families are turning to cannabis as a last resort to relieve their children's seizures, chronic pain and a host of other suffering. But with no legal supply and many doctors unwilling to discuss use of an illegal drug, they are left to run the gauntlet of trial and error and the uncertainties of the black market. In this first part of a series looking at the medicinal cannabis debate, Scott Hannaford meets one family facing tough choices.

This article is the first part of a series looking at the medical cannabis debate

The Department of Family and Community Services officer pulled up next to the low brick wall, tucked the clipboard under her arm and made her way up the cracked paved driveway towards the locked security screen door. Inside, Kaos the dog pulled down the Spiderman blanket covering his cage in the middle of the living room and began to howl.

It had been 15 months since the department had taken an interest in the Dell family, following a tip-off from former ACT Chief Minister Katy Gallagher that they were giving marijuana to one of their six autistic children. Now they were back, and Cherie Dell's heart rate began to quicken.

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As she reached for the purple spray bottle to give the barking dog a squirt, Cherie paused to survey the boxes of medical equipment, unsorted washing piled high on the sofas and general mayhem in front of her. She hadn't chosen the name the breeder had given the excitable white staffie with the brown spots, but as she looked around she thought, "chaos sounds about right," and so the name had stuck.

3-year-old Abbey Dell at home with her family.

3-year-old Abbey Dell at home with her family. Credit:Rohan Thomson

Life had gotten a little easier since the dog had arrived. Her youngest daughter Abbey, who had received the pet as a companion, had finally started putting on weight and the terrifying seizures that made her tiny fists clench tight and her eyes bulge out of their sockets had become less severe and less frequent. After spending more than half of her short life in hospital, Abbey's family had recently celebrated 12 months without a trip to the emergency department. Finally something good was happening. Now the department was knocking on the door again.

It had all started with a phone call, as she bundled her children into the Ford Territory for the morning run to school.

"Is that Cherie Dell?" the unfamiliar voice on the phone asked.

"I'm from the Department of Family and Community Services, and I need to speak to you urgently about your daughter Abbey."

Trevor Dell competed in the Canberra Times fun run in the hope of meeting then Chief Minister Katy Gallagher. He is wearing the T-Shirt he had made to raise awareness of his daughter's condition.

Trevor Dell competed in the Canberra Times fun run in the hope of meeting then Chief Minister Katy Gallagher. He is wearing the T-Shirt he had made to raise awareness of his daughter's condition.Credit:Rohan Thomson

"I can't talk now," Cherie said, hanging up and stuffing the mobile phone back into her jeans.

As she tried to coax her eldest daughter Tahlia to sit down and fasten her seatbelt the phone rang again. And again, and again, and kept ringing, until eventually she could ignore it no longer.

Cherie Dell gives her 3-year-old daughter Abbey a dose of cannabis oil to treat the seizures caused by a rare genetic disorder, CDKL5.

Cherie Dell gives her 3-year-old daughter Abbey a dose of cannabis oil to treat the seizures caused by a rare genetic disorder, CDKL5.Credit:Rohan Thomson

"What?" she said, stabbing at the phone with her thumb.

"We've had a report that you are giving your child an illegal substance, and we need you to come in for an interview," the voice said.

Abbey Dell, who was born with a rare genetic disorder CDKL5.

Abbey Dell, who was born with a rare genetic disorder CDKL5.

I can't give up on my baby - I won't

Cherie Dell

Last hope

As Cherie had knelt on the living room floor with a syringe of cannabis oil between her teeth for the first time, she had thought about what would happen if they ever got caught. They knew it was a risk, but what choice did they have left?

Trevor and Cherie Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder, CDKL5.

Trevor and Cherie Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder, CDKL5.Credit:Rohan Thomson

Looking up from the unmoving body of her profoundly disabled daughter on the floor in front of her, she locked eyes with Abbey's father Trevor.

Like the other families they had sought out for help, they hadn't arrived at this point easily. They knew cannabis would probably just be the latest in a long line of disappointments, and its effectiveness was largely untested on CDKL5 patients - the crippling rare genetic disorder that had left Abbey unable to walk, speak or eat without a tube.

Trevor Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder CDKL5.

Trevor Dell with 3-year-old daughter Abbey who suffers a rare genetic disorder CDKL5. Credit:Rohan Thomson

The doctors had all-but given up hope, but Cherie couldn't. Besides, it couldn't be worse than what they had already tried.

The Sabril one doctor had prescribed was known to send some users blind, so that was out. The high-dose steroids had done nothing useful, and the Clonazepam drops - the worst of them all - had left Abbey in a catatonic state, barely able to breathe on her own. Worse, the pharmaceutical cocktail they had poured into their child every day for the last 24 months had failed to stop the 20-minute seizures from blowing out to 45 minutes at a time. They had tried to keep their expectations low ever since the small brown bottle had arrived in the post. But for the first time in months they had allowed themselves to hope, not for a miracle, but just something - anything positive.

At the home of Cherie and Trevor Dell who treat their 3-year-old daughter Abbey with cannabis oil to treat CDKL5, a rare genetic condition.

At the home of Cherie and Trevor Dell who treat their 3-year-old daughter Abbey with cannabis oil to treat CDKL5, a rare genetic condition.Credit:Rohan Thomson

The actual number of children being treated with cannabis in Australia is impossible to know, with most families living in fear of either having their supply cut off or having their children taken away by child protection authorities.

While cannabis use among adults is common in Australia (around a third of the population have tried it at least once - one of the highest rates in the world) the continued prohibition on any form of the drug has created a medical black hole, where doctors live in fear of deregistration for discussing it openly with patients, and desperate families take their chances on the black market with products of uncertain quality and strength.

Abbey Dell, who was born with a rare genetic disorder CDKL5.

Abbey Dell, who was born with a rare genetic disorder CDKL5.

A recent surge in support for medicinal cannabis use in Australia and a wave of legalisation sweeping across 23 jurisdictions in the United States has led a number of states and territories, including the ACT and NSW, to launch inquiries or announce trials into providing safe access to the drug for those who have exhausted all legal treatment options.

Advances in genetics and breeding in recent decades have also created strains of the plant low in the active compound that gets users high, Tetrahydrocannabinol (THC), but still rich in other non-psychoactive cannabinoids like Cannabidiol (CBD) valued for its pain and nausea relief properties as well as use in reducing seizures.

But with no legal source in Australia, many parents find themselves juggling their children's' doses, upping or lowering the ratio of CBD to THCA, swapping treatment advice with each other on social media rather than with their doctors.

Despite high-profile cases like that of 25-year-old NSW bowel cancer suffer Dan Haslam thrusting the issue back into the political spotlight, cannabis prosecutions in Australia continue to skyrocket.

According to the Australian Crime Commission's latest illicit drug report, police made a record 66,684 cannabis arrests across Australia in 2013-2014, the highest in a decade. Of those arrested, 87 per cent were consumers.

While police typically show little appetite for arresting cancer patients or parents of epileptic children, most remain wary of disclosing their use. When the NSW government recently asked terminally ill patients to sign a register allowing police to turn a blind eye to their cannabis usage, just 40 signed up.

"Sure?" Cherie asked, as she attached the syringe to the feeding tube.

"Sure," Trevor said, although in truth he was anything but.

Like most soldiers, the former Canadian infantryman with the razor-sharp buzz cut, winged maple leaf tattoo on one hand and kangaroo on the other had developed a skeptical dislike of illicit drugs.

"Weak" is how he would describe those who turned to drugs or drank heavily to numb the pain of a difficult life. Yet here they were, about to inject a dose of cannabis into their daughter's stomach.

"You have a choice in front of you," he said to himself. "You can try to save your child, or you can let her perish."

The end of life room

Abbey Dell had been in a hurry to enter the world when on January 29, 2012, she arrived eight weeks and two days early. The tiny girl weighed not much more than a carton of milk and was only slightly larger than her father's outstretched hand. But to Cherie, she looked perfect.

Just over a month later as she prepared to take her home to join her three brothers and two sisters, Cherie caught sight of a startled expression on Abbey's face. She dismissed it as nothing to worry about.

She had always swaddled her babies tightly, but on this afternoon as she loosened the wrap and laid Abbey carefully on her chest, she felt the tiny body on top of her tensing and beginning to shake. Fearing the worst, she called the pediatrician.

"I don't know what's happening, but I think she's having a seizure," she told him.

"OK, just stay calm. Try to film it next time it happens then come and see me in a week," the doctor said.

She lifted her trembling hand and tried to point the phone at the convulsing baby in the pink onesie with the matching dummy lying in her lap, fighting with every ounce of her strength not to drop the phone and bundle her baby up in her arms.

Five times she tried and five times she failed, unable to quell the panic for long enough to capture the look of terror sweeping across her daughter's face. Finally, she managed to hold out for 47 seconds before she could watch no more. As she walked into the doctor's office the following Monday morning and handed him the video of the worst day of her life, the pediatrician studied the screen carefully before handing it back to her.

"You're not going home tonight," he said.

"I want you to take her straight back to hospital," he said, and reached for his desk phone and began dialling the ward.

It wasn't long before the tonic-clonic seizures and spasms began stretching out to five minutes, then 10, then 20. Abbey's oxygen levels began to drop.

"She looks so perfect, tiny, why is this little baby having these horrible things happen to her?" she asked one of the nurses. The battery of blood tests, lumbar punctures and electroencephalograms to monitor her brain activity had failed to yield any answers.

The months went by and the seizures worsened, until one day a nurse led Cherie and Trevor down a corridor of the ICU they hadn't been down before, to a low-lit room with dingy white walls and well-worn sofas.

Inside, the head of the ICU nursing team, Abbey's pediatrician, the head of neurology and a social worker were waiting for them.

"It is felt that clinically, her condition has a 100 per cent chance of getting worse," the neurologist began, as the doctors took it in turns to speak.

"The chest infections mean she has a chronic lung condition, and even if we discharge her we would expect to see her back within a month, at which point we would be facing an end-of-life situation," another said.

"We estimate she has two months left."

As the conversation turned to intubation - a one-way street the doctors explained - Cherie turned to leave.

"I'm not ready to give up," she told the room full of medical staff. "I'm not going there, I can't give up on my baby - I won't."

They had had an expression in Abbey's special needs group - grieving for the child you thought you were going to have.

"The difference between parents of a typical child and one with a disability is the aspirations you have for your child to change," Trevor had once tried to explain to the doctors in the room.

"You don't aspire for your child to be the best footballer or ballerina. You aspire for them to have the best possible quality of life to achieve the inchstones (they preferred the term to milestones - it made the achievements sound bigger) they are capable of. You cry, you get very emotional about any of the hopes and dreams you may have had when they were in the womb or first born, but it doesn't take away the love you have for your child."

As Cherie drove home from the hospital hot tears began to run down her cheeks. For two years the doctors had tried and failed to help Abbey with conventional medicine. She needed another option, they would not simply make the most of what time they had left, as they had been advised to do. As she pulled into the driveway of the rented family home, she remembered a Facebook post she had stumbled on weeks earlier.

Scouring the internet for a possible diagnosis for her daughter's condition, she had come across a group for families of children suffering a severe form of epilepsy known as Dravet Syndrome. Parents in the US with legal access to cannabis were reporting some of their children had gone from bed-ridden to riding bikes, and an Australian mother in the group was also reporting similar results with her son.

Cherie slumped into the converted racing car desk chair in front of the computer and began scrolling through the old posts until she found the one she was looking for. She opened a private message window.

"Please help me," she began typing. "I've run out of options."

Falling

Trevor had always found the rush of freefall intoxicating, the wind pulling at his face as he accelerated towards the earth. On arriving in Australia on an extended holiday he had quickly converted his Canadian skydiving qualifications and headed to the nearest drop zone.

It was the falling that had led Trevor to Cherie in the first place, after bad weather had caught him off guard during a jump at Picton, shattering his right leg in three places on landing. Heading outside the hospital for a cigarette, he struck up a conversation with Cherie.

But now Trevor was falling again. Had the doctors really just asked him to give up on his child, to let her quietly slip away? Was there nothing more he could do as a father?

At home the fights between him and Cherie had become worse, and the doctors were pushing - always pushing them - towards another meeting in the 'end-of-life room' as they had started calling it. He began to withdraw in the only way he knew how, throwing himself into the gym and the running track and away from the chaos of home.

"At least it was less destructive than drinking," he thought to himself.

Now, sitting on the racing car desk chair he looked at the instructions Cherie had received from the supplier in Canberra.

"Approach EVERY new case with extreme caution and always assume that less is more," it read.

"If you wean conventional medicines too quickly the patient has high chances of seizures recurring."

Cherie drew up a 0.4ml dose, just as the instructions had told her to, and slowly squeezed the plunger with the pale yellow liquid into the feeding tube.

Within 24 hours, the intensity of the chronic seizures that had rattled their daughter's body up to 20 times a day appeared to have lessened. Within a week their duration had decreased. Within a month the number of seizures had decreased too, although not completely disappeared.

Five days after her third birthday - the one the doctors said she had no hope of ever reaching - Abbey lifted her head and rolled over. She had started wiggling slowly across the floor in recent days, but this time Cherie waited before rolling her on to her back. Abbey slowly tucked up her feet.

"Take a photo," Cherie said, slowly lifting Abbey on to her feet and gently placing the load on to her daughter's legs for the first time.

"She wasn't holding all of her weight, but close enough," she typed into a hurried Facebook post.

"Proud mummy moment times infinity, doing a huge happy dance!" she wrote, followed by two smiley faces and four pink and green hearts.

In Canberra, the supplier who had sent them the cannabis solution clicked on the photo of a beaming Cherie holding up Abbey. Tears began to run down his face too.

It had been in one of the up times like this, one of Abbey's other big 'inchstones' since starting cannabis treatment that had prompted him to act.

He opened a new email, addressed it to Katy Gallagher, Greens MLA Shane Rattenbury and a handful of doctors and attached the brain scans, a before and after photo of Abbey and the instructions he had provided for turning the plant buds into oil.

"Gentleman and Minister Gallagher, the child I have been assisting with her CDKL5 seizure problem has just had an EEG to assess her brain function after starting a THCA tincture I made for her.

"I am so proud to share this with you. I am proud to have been paid not one cent for the treatment I provided her – and in fact risked over ten years in jail to make it so," he wrote.

But now reporters had begun ringing Cherie and Trevor's home, telling them a politician from Canberra they had never heard of had reported them to the Australian Federal Police and child protection authorities.

Was it true they had been giving their toddler cannabis? Did they know their supplier had been raided?

In a panic, Cherie rushed to the fridge and grabbed the half-full bottle of oil.

Two weeks' worth left, she estimated - but then what? Where would the next one come from, and what would happen if the police arrived on her doorstep?

Now, child protection officers were calling her in for an urgent interview.

She contacted her solicitor, bundled up the folder of papers she had spent more than a year researching, and headed to the local Department of Family and Community Services branch office.

As she was led into the interview room, she reached into her folder and pulled out the charts, showing how the erratic brain activity caused by the constant seizures had settled into a more steady pattern, to the point where, for four wonderful days, Abbey had gone without a seizure.

Next, she pulled out the list of medications with the hospital logo on the top of the page which included the words, 'medical cannabis'.

Finally, she pulled out the chart showing the activities, massage therapy and exercises Cherie had drawn up for her daughter.

For two-and-a-half hours she spoke, presenting the evidence, research and treatment regime she had in place. When she finally stopped talking, one of the officers handed back the folder and placed a hand on Cherie's shoulder.

"We don't want to know where you get it from," the official said. "You are doing a great job, keep giving it to her."

Waiting for change

He had once joked that some politicians made pretty good boat anchors. But the news that the ACT Chief Minister had begun receiving death threats for reporting Abbey's cannabis treatment bothered Trevor deeply.

He had always been a private person who preferred to keep his family's business just that, private, and while he appreciated the support, he was not in favour of threats.

Having worked in management positions himself, he understood that in some jobs, you don't get to make emotional decisions, you have to follow rules, and Katy Gallagher had just been doing her job. What he did resent though, was that no one had bothered to talk to him before deciding to turn his family's life upside down.

For her part Katy Gallagher has repeatedly said she did not know the family or instruct anyone to visit or call them, she had simply followed her legal obligation under child protection laws and sent the email she had received to the appropriate authorities.

"She could have asked, 'why are you doing this?' She could have come and seen Abbey and I could have explained it to her, and if she'd given me the courtesy of saying, 'regardless of what's going on I need to make a report,' it wouldn't have been so bad," Trevor said.

Shortly after the raid and the call from child protection, Abbey's doctors suggested she might be eligible for a possible trial of synthetic cannabinoids. With NSW premier Mike Baird having also announced medicinal cannabis trials, there was also hope that a legal supply might become available at some point in the future.

But the risk of finding their daughter on a placebo, using her as a guinea pig for a largely untested drug, or waiting five to six years for the scientists to conduct their trials didn't sound to Cherie and Trevor like viable options for the little girl who was never supposed to make it past two.

Shortly after word had gotten out about their situation, offers of help had started flooding in via the fundraising page.

There were the usual snake-oil salesmen, trying to charge hundreds of dollars a month for access to cannabis oil, then there were the drug dealers and the time wasters.

But a man known to the first supplier had also sent a message and seemed genuine about wanting to help.

Dreams recalibrated

As Cherie unlocked the front door for the woman with the clipboard, she thought about the first phone call from the department 15 months ago and wondered why they were now standing on her front step again.

"How's the feeding going?" the woman with the clipboard asked.

"Good."

"When was she last in hospital?"

"Over a year ago now," Cherie said, looking down at Abbey who she had dressed that day in her favourite skirt, the blue one with the shiny sequins.

"We can try to get some service to help with the kids, but I can't guarantee it'll be a long term solution. Will you agree to me having access to Abbey's latest medical reports?" the woman asked.

"Why? She's obviously a high-needs child, you can tell that just by looking at her," Cherie said, making little attempt to mask her displeasure at the line of questioning.

"I'll have a look at whether there might be support under the NDIS as well but I can't guarantee there's eligibility or services available," the woman said again, folding away her papers and moving towards the front door.

"God I hate that, why do they have to make it so hard?" Cherie said just loud enough for the woman to hear as she walked back towards her car.

"Always the same, prying into your private life and then telling you, 'we can't guarantee anything'".

Recently she and Trevor had discussed upgrading the car for a modified vehicle that could take a wheelchair for Abbey, who was becoming too heavy for Cherie to lift on her own.

But a new vehicle with the conversion was going to cost $80,000 to $90,000, and Cherie wasn't keen on taking a chance with a secondhand one that might leave her stranded on the side of the road with the children.

"Realistically, if we trade in the car we'd probably have enough savings to start on that, or we could put it towards a house deposit, but not both," Trevor said to Cherie.

"So it's a choice, we either continue to live on top of each other where no one has their own space, or we get a bigger place and can't go anywhere."

He walked into the kitchen, pulled a bottle of water out of the fridge and sat down in front of the baby photos on the computer screen he had been scrolling through earlier that day. It was probably time he updated the fundraising page, but lately he had been too exhausted, and soon he would have to go to work to start the late shift. He paused on an image of Abbey in a humidicrib, a blue tube coming out of her mouth and four tiny fingers wrapped gently around his right thumb.

"We're not perfect parents," he said, "but who is?"

"Sometimes we don't have space to put everything away, but our kids are loved and cared for, we don't go out drinking, we don't throw our money into the pokies, and we don't sit around saying, 'poor us'. We do the best we can with what we got."

Cherie bent down and lifted the blanket off the floor, spreading it back over the top of the cage. The dog had come in from his afternoon run with the children and was ready to resume working on the bone he had begun gnawing on that morning. A slow crunching sound came out from under the blanket. Finally, Kaos was beginning to settle.

Scott Hannaford is a reporter for The Canberra Times.

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