Seven-year-old Mykayla Comstock had been sick for several weeks, with symptoms that included rash, fatigue, night sweats and a hacking cough. Her mother, Erin Purchase, worried that it might be Lyme disease. Instead, in late July 2012, doctors discovered a mass in the little girl’s chest and soon diagnosed leukemia.
“Our entire life changed overnight,” recalls Brandon Krenzler, Erin’s fiancé. The couple had previously enjoyed a peaceful hippie existence, making ends meet by cultivating cannabis, working odd jobs and traveling to festivals to sell their homemade hemp jewelry. They especially cherished the free time that their lifestyle allowed them to spend with Mykayla and her toddler sister, Ryleigh. Now they would focus on only one thing: saving Mykayla’s life.
Erin, a soft-spoken, petite brunette, was already using cannabis under the Oregon Medical Marijuana Program (OMMP) to treat her own liver disease (currently in remission); it was a battle that inspired her to learn all she could about the medicine.
Meanwhile, as a small-time grower and pot activist, Brandon also knew the science behind medical marijuana. While trying to help a friend with lung cancer, the couple had even researched the potential of cannabis as a cancer treatment. That’s when they stumbled upon the story of Cash Hyde, a two-year-old in Montana who miraculously recovered from an advanced brain tumor after his father clandestinely poured extremely concentrated cannabis oil -- Rick Simpson’s “phoenix tears,” otherwise known as RSO or “hemp oil” -- into his feeding tube.
“I fell in love with this little Cashy Hyde,” Erin says, “never thinking that my own little girl was gonna have cancer just a couple months later.”
Immediately after Mykayla’s devastating diagnosis, the family left their home in Pendleton to be near the children’s hospital in Portland where she would undergo a rigorous course of treatment, including intensive chemotherapy. Living in an RV parked outside of a friend’s house, they endured fear and stress along with financial troubles.
“The doctors started talking to us about potentially doing a bone-marrow transplant, because the chemotherapy wasn’t taking care of the leukemia,” Erin explains. “That’s when we went and got her RSO oil.” Seven days later, Mykayla was in remission, with the level of leukemia-cell saturation in her bone marrow dropping from 30% to zero. Today, Mykayla is still undergoing maintenance chemotherapy treatments, and she won’t be considered officially “cured” until she is cancer-free for five years.
When I arrive at the suburban home that the family now shares with friends, Mykayla is busy coloring, one of her favorite activities. I watch as she covers a page in pink and purple, intensely focused on filling in the patterns of a complex mandala. Her skin is pale and her head is bare, but otherwise, she seems just like any other bright young girl with a dazzling smile -- one who loves wearing pink tutus, playing games with her baby sister and decorating with stickers. Mykayla enjoyed being in school and had a lot of friends, but since the illness has suppressed her immune system, it’s necessary for her to lead a very sheltered life. She’s looking forward to an upcoming Make-a-Wish trip to Hawaii, because she wants to “swim with the dolphins in Oahu and go to the Dole pineapple maze.”
When I ask Mykayla what she wants to be when she grows up, she replies, “I wanna be a doctor so I can help other people.” Going to the hospital for treatments no longer terrifies her, but this brave little lady admits to still getting nervous sometimes. She’ll have to endure more tests, treatments and examinations for another two years at the least.
“I know that cannabis causes apoptosis [a form of programmed cell death] in leukemia cells, and I truly believe that the oil helped her go into remission,” Erin says. “Without cannabis, I think Mykayla would be very sick and would have to use a lot more pharmaceutical medications.”
While, under the circumstances, many families would be tempted to keep this good news to themselves to avoid official condemnation and even potential legal repercussions, Mykayla’s parents have made the difficult decision to go public, joining a growing number of courageous pioneers sharing similar stories and demanding full pediatric access to medical marijuana to treat conditions in their children as diverse as cancer, epilepsy and autism. At a recent fundraiser for the family’s health-care costs hosted by activists and allies at Portland’s World Famous Cannabis Cafe, Erin told me that she wanted their example to give other parents the strength to do the same. “Basically, my biggest reason to go public is to inform people that medical marijuana is an option, since doctors don’t tell parents about it at all,” she says. “More people should talk about the benefits of cannabis, because it can help a lot of children.”
Starting in 2009, several high-profile cases received mainstream media attention that helped spread the word, including that of California resident Meiko Hester-Perez and her son Joey, who uses edible cannabis brownies as a treatment for autism. During an appearance on "Good Morning America," Meiko credited the herb with saving her child’s life: “My son had self-injurious behaviors. He was extremely aggressive, he would run out of our house ... he was a danger to him- self and others.” The marijuana allowed Joey to calm down, develop an appetite and gain weight.
Lack of success with traditional autism treatment soon led other parents to follow suit, as writer and mother Marie Myung-Ok Lee chronicled in a series of essays on Slate. “Pot has allowed us to bypass the powerful psychotropic drugs that are often used to dull such aggressive outbursts but have a host of serious potential side effects -- including permanent tics, diabetes, and death -- and did nothing to address J’s pain,” she wrote. Living in Rhode Island, the Lees have been treating their son with legal medical cannabis for several years, and Marie is happy to report that J was able to stop eating his own clothing and even learn to ride a bicycle.
In California, Jason David treats his son Jayden’s Dravet syndrome -- a rare and extreme form of epilepsy -- with cannabis tinctures specially prepared for him by Harborside Health Center. My Fox 8 reported that after a year of being treated with tinctures high in the medicinal cannabinoid cannabidiol (CBD), Jayden is “beginning to live the life of a normal child. He is able to play, run, climb and eat solid food. Before he started taking legal medical marijuana, he had to swallow 22 pills a day to treat his epilepsy. Now he’s down to just a pill and a half.”
Sadly, the case that garnered the most national media attention -- and inspired the most parents -- was also the most tragic. Cash Hyde, the Montana toddler who began to battle Stage IV brain cancer just 20 months after his birth, finally succumbed to the disease last November after four years of fighting and two full remissions. His father, Mike Hyde, secretly administered RSO to Cash while he was in the hospital -- after he’d already been declared terminal by his doctors. Miraculously, Cash was pulled back from the brink of death to live for several more years. After the tumor returned for a third time, however, Mike and his wife Kalli decided to honor Cashy’s request of “no more pokes” and spare him the horrors of chemotherapy yet again.
Even in medical marijuana states, parents risk interference from Child Protective Services for pursuing safe access. Parents considering treating themselves or their children with medical cannabis are advised to seek out a competent attorney and have notarized temporary-guardianship papers drawn up so that, in the case of a visit from CPS, their children will be placed in the home of a friend or family member instead of a potentially unsafe foster-care situation. Moms for Marijuana, an activist group dealing with issues faced by medical marijuana patients caught in custody battles or CPS disputes over their cannabis use, offers a supportive network for concerned parents. And Kris Hermes from Americans for Safe Access says: “Parents of sick children should consult a physician when considering a course of cannabis treatment, as it is not for everyone. There is evidence that children with cancer, seizures and other health conditions can benefit from medical marijuana, but that should ultimately be a decision between physicians and their patients.” But all of these people agree that the use of a healing herb -- especially in states where it is legal -- should never result in a parent being separated from their child by the government.
“When it comes to children, it’s going to be very hard for people to accept cannabis as any kind of treatment after all the years of prohibitionist propaganda,” Brandon Krenzler says. “Hell, I love cannabis and I have used it for years -- and still, when I gave Mykayla that first dose, I was a little bit worried about it.”
The controversy over the treatment -- as well as the unwillingness of doctors to risk their careers by recommending it -- remains a serious impediment to relieving suffering. No official research into cannabis as a pediatric cancer treatment has been undertaken, since it’s classified as a Schedule 1 narcotic with no medicinal value. It’s a situation that’s beyond frustrating for Mykayla’s mom, who remarks: “If cannabis was fully legal, then Mykayla’s doctors -- along with the cancer research groups -- could begin using cannabis in their research.”
Without the official blessing of the cancer-industrial complex, such research is being carried out privately in hundreds of homes. Within the close-knit cannabis community of Portland, Mykayla and her family were fortunately able to find help fast, as other activists supported them in their time of need. Jenifer Valley and Mike Mullins of Stoney Girl Gardens provided the RSO oil pro bono, enabling Mykayla to start a rigorous course of treatment within seven days of her diagnosis. “Start fast,” Brandon says. “Don’t wait until the end and use it as a last resort.”
There are many methods for making concentrated cannabis oil, some of which use naphtha or other toxic solvents, but the team at Stoney Girl Gardens uses food-grade alcohol, usually 190-proof Everclear or Crystal Springs. “We also use only our exclusive strains, organically grown, because the genetics you use matter,” Jenifer explains. “Once the alcohol is cooked out, we put it in jars to store and oral syringes for dispensing measured doses.”
In addition to the RSO oil, Mykayla uses pot-infused edibles donated by Aligra and Alex at Collective Awakenings, including recipes specifically tailored to suit a child’s body weight and tolerance. Mykayla’s favorites are the bite-size cake pops and high-CBD suckers. “Fifty percent of our patients are over 55 years old, but we do have other pediatric patients,” Aligra explains, “including children with Tourette’s, IBS and mood disorders.”
The good news is that this knowledge is spreading fast, as more and more families realize that their heartbreaking struggles with cancer, epilepsy, autism and a range of other diseases can potentially be helped by safe access to cannabis. Children are regularly being prescribed mind-bending amphetamines like Ritalin and dangerous pain-relief drugs like OxyContin. It’s really only prohibitionist propaganda that’s keeping children in need from gaining access to medical marijuana.
“You never know when your grandma, mother, father, sister, brother or your very own child is going to be diagnosed with cancer. I never in a million years thought that this would happen to my daughter,” Erin says. “It makes me frustrated that so many children are suffering unnecessarily when there’s this plant that doesn’t even harm their little bodies, and it works.”