Two-year old Waldo Dwyer dabs his finger in a small puddle of hot sauce on his high-chair tray and sticks it in his mouth. The child looks perturbed for a moment, then bursts into laughter at the spicy sensation.
Waldo has good reason to be happy. When he was six months old he was diagnosed with a rare form of eye cancer and was facing an uncertain future. Doctors said he had a 50 percent chance of losing his eye. Today Waldo is tumor free, an active, outgoing kid full of energy, thanks in part, his parents say, to cannabis oil.
“This story is incredibly hopeful,” says Brian Dwyer, Waldo’s father. “It’s about plants, the people who grow them, and medicine that is sacred.”
Instantly recognizable by his tall figure and curly head of red hair, Dwyer is well-known in some circles as the founder and former owner of a popular pizza restaurant and museum in Philadelphia’s Kensington neighborhood. Waldo himself was already a minor celebrity as well. He weighed an incredible 13 pounds 8 ounces when he was born in April 2014, landing him a spot on local, national, and international news.
At first, Waldo was a healthy, happy baby, but six months into his life, his parents made an alarming observation. “We started noticing a reflection in his eye, and a gray mass,” says Dwyer.
They took him to the doctor, who diagnosed bilateral retinoblastoma, an aggressive cancer and terrifying prospect for a six-month-old child. “Anyone in new parent territory doesn’t want to think about charting those waters,” his father says.
The doctors recommended starting chemotherapy immediately. After his initial treatment, Waldo got sicker and sicker. He lost weight, he was vomiting, suffering from constipation, listless, irritable, and not interested in eating. “He was turning into a shell of the kid I knew,” Dwyer says.
To treat his reaction to the chemo, doctors gave him anti-nausea medication and other drugs. One suggested opiates. They warned Waldo’s parents about how careful they had to be with all the medicine to avoid even worse effects. He could go deaf, blind or sterile, or suffer second degree burns if some of the drugs touched his skin.
Struggling with the weight of caring for a sad, sick child, Dwyer told some close friends about Waldo’s diagnosis and they suggested that he look into medical cannabis. “It’s pretty taboo to consider,” he says. “People think of this plant as a drug, and drugs and kids don’t go together. But chemo is full of capital D drugs, and that’s okay for kids?”
He went online to learn more and came across stories of other parents who used cannabis to help their kids fight cancer, like Brave Mykayla and Team Landon, who both suffered from childhood leukemia. Against the odds, the children were surviving and thriving. Dwyer started to reach out to parents in similar situations and found a wealth of resources and a nationwide community that welcomed him with open arms to answer questions and assuage concerns.
One of his advocates was Brandon Krenzler, father of Mykayla and executive director of Parents 4 Pot, an organization that supports parents using or seeking medical marijuana for their children, as well as those who face charges because they broke the law to access medical cannabis. “Communion is very important,” Krenzler says. “And counsel. It’s the number one thing you provide someone in their time of need. Everyone needs someone to lean on in their time of stress or worry.”
The good news is cannabis has shown promise in treating childhood cancer as well as epilepsy, autism, and other illnesses and disorders that frequently defy conventional interventions. In addition to helping with nausea, appetite loss, pain, and other symptoms, there is evidence that cannabis can help treat the underlying cancer itself through the body’s endocannabinoid system. Research has been limited, however, due in large part to government restrictions and the stigma surrounding marijuana usage.
Frequently, therefore, parents interested in trying cannabis don’t know where to turn to find more information or acquire the medicine, and the fact that marijuana is still illegal in many parts of the country is a daunting obstacle as well. Parents 4 Pot helps by finding people who can act as patient resources and advocates. “A big part of what we do is connecting families to each other,” Krenzler says.
Medical marijuana was still illegal in Pennsylvania in 2014, so Dwyer needed to travel to a more friendly state to find a trustworthy source. “The community said if you can get to us, there’s medicine for you,” he says.
With the help of his new friends, Waldo’s family found themselves in contact with a woman known as Dr. Dina. Not actually a medical doctor, Dr. Dina is something of a celebrity in the medical marijuana business, known, among other reasons, for being Snoop Dogg’s personal supplier. But the bulk of her business is helping everyday people find and access the proper strain of cannabis to treat their illnesses. “I research out quality medicine, have things lab tested, and know exactly what each patient is getting,” she says.
She originally got into the industry 13 years ago to help a friend with lung cancer find marijuana, ended up opening a dispensary in Los Angeles, and has been studying the effects of the plant ever since. In Waldo’s case, she helped pick out an ACDC strain that is 20 parts CBD, or cannabidiol, to one part THC, or tetrahydrocannabinol. Advocates believe that a small amount of THC is necessary for the medicine to deliver its full effect, but the quantity is minute to avoid causing an altered or high state in the child. “We put together a different treatment than most because he’s so young. I did not want Waldo to be stoned, or overly medicated,” Dr. Dina says.
Waldo’s parents wanted to act as soon as possible to see if the oil could help mitigate some of the negative side effects of chemotherapy, so Dwyer traveled to acquire the medicine within a week of Waldo’s diagnosis. “Treating someone very quickly is imperative,” says Dr. Dina. “You want to start treating them with cannabis before they start chemo, if possible.”
When he got the medicine back to Pennsylvania, Dwyer concocted a mixture of water, coconut oil and the cannabis oil and dabbed it on Waldo’s tongue. The effect was immediate. “Within an hour, he changed,” he says. “It was like the last week never happened.”
From that point on, Waldo stopped losing weight, stopped vomiting, and was back to his old self. He continued taking the chemo drugs to fight the tumor but no longer needed any of the other accompanying pharmaceuticals to treat side effects. His parents never revealed that they were using cannabis, and doctors called his recovery a miracle. “They told us, whatever you are doing at home, keep doing it,” Dwyer says.
After six months, the chemo regime was over and Waldo has been healthy ever since. His eyes are fine, although he still needs regular checkups to ensure that the cancer has not returned. Now having witnessed the effects of cannabis oil first-hand, Dwyer is eager to spread the world and help other parents in need. He was haunted by the desperately sick children he passed in the hospital when Waldo was undergoing treatment, and wants parents to know there is another path.
To that end, he is working on a documentary about Waldo’s journey and has set up a GoFundMe page to help raise money. Within 12 hours, he had met his $3,000 goal. Now, with over $9,000 pledged, he has promised to donate any additional dollars to Parents 4 Pot and another organization, Freedom Grow, that helps people in prison for cannabis-related crimes.
The more the message is shared, the more parents will know that cannabis is an option that can supplement conventional medicine, possibly replace it in certain scenarios and mitigate some of the worst side effects. “Do not make medicinal cannabis your last resource. Make it your first resource,” says Krenzler. “We want to defeat stigma and normalize its use in society.”
There are still plenty of roadblocks for people living outside of cannabis-friendly states. Pennsylvania, for example, became the 24th state to legalize medical marijuana in April 2016, but the law will not go into effect for several years, and the regulations promise to sharply limit how it can be grown, distributed, and used. In any case, marijuana is still prohibited under federal law and is classified as a Schedule I substance by the Drug Enforcement Agency, who consider it a drug of abuse with no medical value. Hemp oil, derived from non-psychoactive cannabis plants, is legal and more widely available, but advocates say it has little to no effect compared to the benefits of oil derived from more potent marijuana plants.
Since he’s gone public with his story, Dwyer says he hasn’t encountered much backlash, aside from a doctor who compared medical marijuana to holy water in a local news story. Most of the negative reactions have come from people who worry that he will find himself in legal trouble for sharing his story. He says he has to speak out, however, to show parents with sick children that there is hope and help them learn about potentially life-saving treatments. “When I was in the situation, I was lost,” he says.
Now, after experiencing the unthinkable, Dwyer says he feels filled with hope and purpose. “It all comes back to him,” he says of Waldo, who is running around the house and attempting to ride a skateboard down the hallway. Laughing out loud, the child picks up a toy sword and starts sparring with his father, back and forth across the living room.
“People can argue with me all they want,” Dwyer says. “All they have to do is spend two minutes with Waldo and they will see the power of cannabis is real.”