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The emergence of cannabidiol (CBD) has changed the entire scope of the cannabis industry and the cannabis legalization movement — for better and for worse. Because the stigmas and fears that relegated the plant to illegal drug status have had an inordinate focus on children, the idea that CBD alone is safer for them than THC because they don’t get “high” continues to prevent the most vulnerable from accessing proper plant-based relief.
When CBD entered the mainstream zeitgeist, it was immediately more palatable to a society just waking up from Prohibition. Television specials about children with intractable epilepsy using orally administered high-CBD extracts were a comfortable bridge into the acceptance of herbal medicine. But the obsession with CBD has resulted in the majority of pediatric patients being guided to avoid higher THC varieties that might provide the relief they need. Starting with Utah in 2014, conservative states around America started passing preventative medical marijuana bills, or “CBD-only laws.” These laws allowed only epileptic patients to possess otherwise illegal high-CBD extracts, but put a hard stop on raw high-THC cannabis flowers.
Corporations seized the opportunity of growing unmet demand in illegal states by marketing “hemp-CBD” extracts as “legal in all 50 states.” Harkening back to a 2004 ruling in the US Court of Appeals for the Ninth Circuit, Hemp Industries Association v. Drug Enforcement Administration, they claimed their products were 100 percent legal since they came from hemp and were less than 0.3 percent THC, a wholly arbitrary but agreed-upon definition to legally separate marijuana from hemp, despite them being the same cannabis plant.
Patient stories have changed the conversation on cannabis, and none more so than the stories of children with cancers and incurable diseases. The first stories of children using high-THC cannabis to treat severe cases of autism started emerging out of the medical marijuana community in Northern California in the late 1990s. As social media emerged, more stories about more adults with more conditions started to filter through new social networks. But in 2012, it was one child’s story that changed the national conversation on pediatric use, paving the way for the CBD phenomenon. The irony is, that child used a lot of THC.
Mykayla Comstock became world famous when she was just seven years old. In July of 2012 she was diagnosed with a rare form of leukemia, and while her parents did use the traditional route of chemotherapy, they decided against brain radiation and opted instead for very high doses of high-THC, full-extract cannabis oil (FECO, a.k.a Rick Simpson Oil, or RSO). Mykayla’s cancer went into remission within a week of starting the cannabis oil and today she is still in remission, with a lower chance of relapse and less residual pharmaceutical effects than other children who have received similar diagnoses.
Images of “Brave Mykayla” laughing, dancing and playing, her head bald from the chemotherapy, were documented by Vice News and Ricki Lake among others, and spread millions of times online. Her parents were criticized for bringing the story public and talking heads would muse about what sort of brain damage she would end up with as a result of the THC exposure. But to real people in need, her story was an epiphany. Even the most conservative families who saw the images were forced to question their prior notions and seek it for their own friends or family. Mykayla’s mother Erin Purchase says even years later she is still getting hundreds of messages a week from people all over the world who need help for their children. For years she answered them all.
“[The messages] never slowed down at all, there is just as much of a desire [to treat children with cannabis] today as there was five years ago. So many cases have been proven since then and there is even more of a desire for information people still don’t have access to because of federal law,” Purchase says.
But Purchase had to stop looking at or responding to the messages; she had to prioritize her own family. Still, she says she wishes she could help, because it’s not fair to the parents. She and partner Brandon Krenzler put all the need-to-know information about Mykayla’s treatment online and opted to create more privacy for her and her siblings as they grow up.
“It felt good to provide them with advice they need — a lot of these families need someone to talk to. … They need support when their child first takes the oil. They need someone who has been there and been through it,” Purchase explains.
Purchase and Krenzler are proud that Mykayla never took a single opioid or anti-anxiety medication during her cancer treatment. Today they are even more secure in the decision; because she was on far fewer pharmaceuticals than other kids, she didn’t experience the same side effects like neuropathy, wasting, depression and extreme pain. Instead, she was “smiling, happy and hungry.” And while Purchase already had a thorough understanding of medical marijuana before giving it to her daughter, even she had anxiety about getting Mykayla “high.” She says a lot of that is attributed to unsupportive doctors and to the law.
“When kids have bad reactions to pharma, you don’t feel as guilty because you are following doctor’s orders. With cannabis, you aren’t and you feel a tremendous amount of guilt when you see kids use it,” Purchase admits. “Most parents wait until their kid has exhausted medical options and literally dying before they do it. I wasn’t that way.”
Talking to Mykayla, now 13 years old, it’s pretty clear that the fear people had about her development using high doses of THC at such a young age were wrong. She is mature beyond her years, but settling in comfortably to being a normal kid; she babysits her brother and sister, she talks on her cellphone with her friends, takes dance classes, and is looking forward to starting drama classes next year and auditioning for a play. When she grows up, she wants to be “a hairstylist, a makeup artist, or both.”
She says she enjoyed being “cannabis famous.” She liked being on stage and had fun seeing and meeting so many people — it was only “kind of a little” weird that so many strangers knew her name. Since that time, though, more children’s stories have gone public and Mykayla’s health is no longer an issue. She wants other kids to know about how cannabis helped her, but has chosen to stay more private in school. She only recently stopped hiding her scars and started opening up to her friends about having had cancer. She is most nervous, however, about how other kids would react if they found out.
“Kids are on Google and they search up names,” Mykayla says. “They are gonna find out I used cannabis and they will come up to me and be like, ‘What the heck?!’”
Purchase chimes in, “That is a problem prohibition caused. These children have to deal with feeling they will be ostracized or judged. These cannakids who used it to save their lives, they are stuck in the weirdest predicament.”
Pointing to the mixed messaging at schools, Purchase adds that last year Mykayla graduated from the D.A.R.E. program, where she was taught about “the dangers of THC.” Purchase says the cops and school administrators all know Mykayla’s story and have not judged or said anything negative — at least, not openly. Mykayla’s D.A.R.E. instructor, a police officer, even gave her a barbed-wire cross with a pink plaque with the word “Hope.”
Every adult in Pendleton, where Mykayla lives, knows her story. The eastern Oregon town of just 16,000 is located along I-84, the Oregon Trail, and Purchase’s family has lived there for generations. They are “downwinders” to the Hanford nuclear facility in nearby Washington, where large portions of the atomic bombs dropped on Hiroshima and Nagasaki during World War II were assembled. In their circles, cancer — and particularly childhood cancer — is not uncommon. Mykayla says she hopes every kid with cancer is able to get the access she did.
“It’s an inspiration, it’s a good thing. It makes me happy to know other people know about it,” Mykayla says.
There is a lot of fear and very little science when discussing treating kids with cannabis. Ironically, the biggest concern regarding children is the consumption of THC, despite the fact it’s already considered a safe and effective medical treatment that is, in pharmaceutical formats, regularly prescribed to children, especially those with cancer. While Mykayla’s pediatricians and oncologists were uncomfortable recommending cannabis, they did prescribe Marinol (dronabinol), which she didn’t take.
When rumblings of cannabis having medical value started emerging from the AIDS community in the 1980s, the Federal Drug Administration approved the first version of pharmaceutical cannabis. Marinol is pure synthetic isolated THC, unmitigated by the other chemical compounds found naturally occurring in the plant. Ironically, while the entire cannabis plant remains a Schedule I drug under the Controlled Substances Act, with no federally recognized medical value because of the fear of THC, synthetic THC is a Schedule III drug prescribed to both children and adults. Cannabidiol still is technically illegal, despite the pending FDA approval of GW Pharmaceutical’s Epidiolex (cannabidiol), a standardized high-CBD botanical tincture.
Epidiolex will be targeted specifically to pediatric patients with intractable epilepsy. It will also signify the first time the US FDA has approved a botanically derived cannabis medicine and will be a major boon to GW’s stock value.
But it might not even work for all epileptic children, particularly 10-year-old Laila* of Portland, Oregon. According to Laila’s mother Shanna*, although Laila is legally allowed to use cannabis and is enrolled in the Oregon Medical Marijuana Program, some of her current doctors aren’t supportive, and friends and acquaintances don’t know about her medical cannabis consumption.
Not only would Epidiolex not have enough THC for Laila, who has responded best to a 1:1 ratio of THC to CBD, but no one variety would be enough for her. Laila’s mother Shanna has found that Laila responds best to switching up the varieties at least every six months.
For the last three years, Laila has been pharmaceutical free. Shanna is treating Laila with a combination of cannabis and the ketogenic diet. For most of her short life, Laila has been on a cocktail of up to nine antiepileptic drugs and was still seizing daily. She was considered intractable because she was not responding to traditional pharmaceutical therapy. After starting diet therapy, she went almost a full year without a single seizure and now averages one a month, although today’s seizures are briefer and less damaging.
Before trying the cannabis and diet combination, for almost three years Laila was unable to walk or get out of bed. She couldn’t speak at all and was stuck at a developmental level of that of a three-year-old, thanks to the pharmaceuticals and frequent seizures.
“She was on Topamax, Lorazepam, Keppra, Phenobarbital,” Shanna says, quickly listing the drugs and their accompanying effects. “We would give her these medications and she would have a seizure. I would ask my doctor how we could know if this was effective cause she kept having seizures. The doctor would just add another one and tell me that sometimes the combinations worked.”
The side effects of the medications included loss of appetite, insomnia, slowed development and increased seizures. After a doctor in San Francisco suggested Laila try cannabis and the ketogenic diet together, Shanna started researching. She was worried about giving Laila THC, but was mentored through the experience by Mykayla’s mother. Shanna started by giving her daughter high-CBD extracts, but slowly began to up the THC dose as she correlated it with improvements. She said at that point, she wasn’t afraid of THC.
“My daughter had nothing anyways. I was willing to try anything, I wanted to try anything. I wanted my daughter back, she is my only child and something wasn’t right, I just had to find it,” Shanna says.
Still, while Shanna was “nervous and afraid” about getting Laila high, now her daughter gets out of bed and plays, smiles and laughs like a normal child. She can communicate better and is going to school now. Shanna does not regret using cannabis, and only wishes she had had the opportunity years earlier.
To parents of children it could help who are afraid of the high, Shanna says, “It’s not going to [get your kid] high, it is going to improve their seizures, improve their life. It’s not scary, the child will thank you.”
The available science supports the use of a wide variety of cannabis medicines for people of all ages and for all conditions. Not all humans respond the same way to substances, and organic substances like cannabis are never standard as a pharmaceutical is. What is working for Laila is the ability to change varieties while maintaining a consistent dose of THC and CBD. What worked for Mykayla was a blend of high-THC strains extracted into oil. Neither child would have benefited more from any single variety or product. Cannabis was also integrated with diet and lifestyle.
According to Cancer.org, treatments like chemotherapy and radiation can in some rare cases lead to secondary cancers within 10 years after remission is induced. Because Mykayla’s parents avoided brain radiation, her chances of secondary cancer are lower than the average pediatric leukemia patient.
“She is a unique person in her research group because she didn’t have any of that [brain radiation, higher-dose chemotherapy]. It makes her chances of having cancer again less,” Purchase says.
They are going into year six of remission and with each passing year Mykayla’s chances of relapse into secondary cancer lesson more. In two to four years, she will have the same rate of getting cancer again as the average healthy person. The family has focused on moving on, they have a successful dispensary and are expanding to an organic food truck, which Mykayla is excited to work in. Treating Mykayla’s cancer, and the journey it took the whole family on, has encouraged them to spread some of what they learned to their community through the work they do.
“Mykayla’s journey plays a huge part in all of what we do today. It’s not just her journey. You can choose to either take the bad stuff and bottle it up and be angry with life, or do something beautiful with it,” Purchase says.
Over the years, Purchase says she and Krenzler had been criticized harshly for “exploiting” her daughter’s story to promote whole-plant cannabis for children. When asked why she did it, she answers without hesitation, “To save other kids.”
“It made me feel more, like, happy and stuff, instead of feeling sad and gloomy all the time. It made me feel healthier. It made me want to eat,” Mykayla says.
“That,” Erin says. “I could not share that. We don’t regret sharing her story. I would never do anything different.”
*Laila’s parents Bob and Shanna chose to anonymize their identities due to the controversial and sensitive nature of her treatment.