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Medical marijuana for kids

It’s here. It’s legal. Yet parents are still afraid to ask for a drug that may help.

Hailey Jean Pease

Hailey Photograph from Shannon Maxim

Hailey Jean Pease

HAILEY PEASE was 7 years old when she was diagnosed with T-cell acute lymphoblastic leukemia. Her first round of chemotherapy, in April 2011, “didn’t work,” says her mother, Shannon Maxim. And the second round “nearly killed her.”

Hailey, who was being treated at Boston Children’s Hospital, started refusing her medicine, and then she stopped eating — a common symptom of both the cancer and its treatments. Doctors threaded a tube down her nose and into her stomach, making it possible to administer food and medicine. “The chemo had destroyed her esophagus to the point where she couldn’t eat,” says Maxim, a former certified nursing assistant. Other parts of her body started to fail: “It was like she was shutting down inside.

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“She was heavily sedated. She was on dialysis. Her blood pressure was unstable. They were literally adjusting seven to 10 medications,” says her mother. “It was a mess.”

She had asked doctors to give Hailey Marinol, a synthetic form of a chemical found in marijuana that is frequently prescribed to cancer patients to fight nausea and stimulate appetite. Doctors hesitantly agreed and administered a few doses, but Hailey said she didn’t like the way it made her feel. What’s more, it didn’t make her hungry. By mid-June, doctors told Hailey’s parents that there was nothing else to be done. Children’s Hospital has “an ‘end of life’ room, and that’s where they put her for three weeks,” Maxim says.

In early July, Hailey told her parents she wanted to go home. Back in Wareham, Hailey was given heavy pain medicine, now through an intravenous line, and she continued to receive platelets and blood transfusions at Children’s three times a week.

During this period, a friend of Maxim’s told her the story of a Montana boy named Cash Hyde who suffered from brain cancer. His father gave him medical oil of marijuana, according to news reports, which seemed to help him tolerate and bounce back from the chemotherapy. (Hyde died in 2012; his parents remain medical-marijuana activists.) Maxim began to consider trying the same thing with her daughter.

Hailey, meanwhile, was sleeping more and more and still not eating. Through a friend who had legal access to medical marijuana at a clinic in a neighboring state, Maxim acquired small amounts of tincture as well as butter, lollipops, and bread made with marijuana.

“I knew what was right and what felt right,” Maxim says, though she didn’t bring up what she was thinking with anyone at Children’s Hospital because she was afraid of the state’s Department of Children and Families. She feared that if authorities found out, Hailey would be taken away — and she didn’t think she had much time left with her. She also feared that because Hailey was so fragile and weak, the marijuana might not be good for her. What if she died immediately, Maxim says she asked herself. “What kind of a parent gives their child marijuana? I was terrified I’d be responsible for her death. I feel differently now.”

Hailey had survived longer than the one month doctors had said she would live. But she wasn’t getting better. The friend who brought Maxim the medical marijuana products had explained how to administer them, saying she should start with a small amount of the tincture. If need be, she could increase the dose, but the worst-case scenario, the friend explained, was that Hailey would fall asleep — it was not going to kill her. One day, Maxim decided it was time to give it a try.

“We were getting ready to go to clinic for her blood transfusion,” she says. “While Hailey was sleeping, I put the tincture in the tube,” which was how she still received nutrition. Maxim didn’t tell Hailey. She was concerned that if Hailey knew she’d been given a drug to make her hungry, she might just say she was hungry, even if she wasn’t. And Maxim was very concerned about scaring her daughter — she didn’t know what Hailey had been taught about cannabis in school.

***

Shannon Maxim with Hailey during her illness.

Hailey Photograph from Shannon Maxim

Shannon Maxim with Hailey during her illness.

WHEN SHANNON MAXIM was struggling to help her daughter through leukemia, medical marijuana was still illegal in Massachusetts. On November 6, 2012, 63 percent of Massachusetts voters approved the use of marijuana to treat conditions in circumstances where a doctor thinks the benefits outweigh the risk. Eighteen states and the District of Columbia recognize medical marijuana, according to the National Conference of State Legislatures, and all but two of those jurisdictions permit its use in children. The federal government still considers marijuana a banned drug and has targeted medical marijuana clinics and dispensaries, primarily in Western states, for prosecution.

The Massachusetts law, which went into effect January 1 though final regulations weren’t approved until May, specifies that for medical marijuana to be made available to children younger than 18, two state-licensed physicians, at least one of whom specializes in pediatrics, must agree the potential benefits of medical marijuana outweigh the risks. (Adult patients need only one doctor.) In addition, juvenile patients must have written consent from at least one parent or guardian who understands the potential benefits and harms and who will serve as caregiver. With those safeguards in place, young patients facing ailments ranging from cancer to autism to epilepsy may be treated with medical marijuana.

It’s about time, says psychiatrist and longtime medical marijuana advocate Dr. Lester Grinspoon, an associate professor emeritus at Harvard Medical School. Grinspoon explains that marijuana has been used to treat children in the United States since the 19th century, when an alcohol-based solution called cannabis indica was taken for pain from an ear infection or was rubbed onto an infant’s gums to ease teething. It was also used to treat seizures and epilepsy. He has reviewed more than 100 clinical papers on marijuana’s therapeutic value written between the 1840s and 1900; the literature includes marijuana’s use in children. More recently, he says, it has been employed to relieve the negative effects of chemotherapy, like nausea. And for children with autism, it can help mitigate the outbursts and destructive behaviors sometimes associated with the condition.

“I’ve been studying marijuana since 1967,” says Grinspoon. “I started to study it because I was so concerned about all of these young people who used marijuana, that they were harming themselves. I believed all the things everybody was told about it. My best friend at that time was Carl Sagan, and I would tell him not to smoke it, and he would say, ‘Oh, Lester, it’s harmless.’ ”

Grinspoon changed his mind after his own teenage son used marijuana when he was undergoing treatment for lymphocytic leukemia in 1971; the boy, Danny, died of the cancer in 1973. Danny found that medical marijuana eased his suffering from chemotherapy. That inspired Grinspoon to learn more. “I went to the Harvard library and started reading,” he says. “It fascinates me: one, the properties of the drug itself, and two, that I and so many others had been so misled about it.”

But some doctors argue that there may be special dangers for young people using medical marijuana. Dr. Sharon Levy, a pediatrician and addiction specialist who runs the Adolescent Substance Abuse Program at Children’s Hospital, is one of them. “We all know [medical marijuana] can relieve pain and stimulate appetite,” but it can also cause harm, she says. “Studies of adolescents exposed to marijuana recreationally link marijuana use to mental health and thought disorders,” she says. “Exposure to marijuana during adolescence is associated with IQ decline over long-term use.” She notes that “these weren’t randomized controlled studies, but this is the best that’s out there.”

“I’m a pediatrician and a parent,” she says. “I think what we have to evaluate is, if the child will survive, we need to protect their brains.” Children, she explains, are resilient. While parents might witness helpful effects in the short term, it’s “much harder to pick up on long-term effects.” If medical marijuana “relieves your child’s nausea but drops their IQ,” that’s problematic. (The subject is still a touchy one. Levy was the only doctor Children’s Hospital could make available to speak on the topic of medical marijuana; no nurse or doctor who has experience with terminally ill children could be found.)

Grinspoon sees things differently. “There are no double-blind studies,” he says, referring instead to decades of anecdotal evidence of its benefits in some children with cancer, autism, and epilepsy. “The question is: Is it more useful and less toxic than the pharmaceuticals the child is getting? There is no question the toxicity is very little. You just have to make sure not to give them too much to make them uncomfortable.” These days, he adds, cannabis growers are able to produce marijuana that doesn’t give the patient a psychoactive “high,” Grinspoon explains. “If I were prescribing for a child, I’d insist the child get a strain high in CBD,” or cannabidiol (as opposed to THC, short for tetrahydrocannabinol, the compound that pharmaceutical Marinol mimics).

Dr. Giannoula Lakka Klement

Photo by Webb Chappell

Dr. Giannoula Lakka Klement

Dr. Giannoula Lakka Klement, who specializes in rare tumors and pediatric oncology and hematology at the Floating Hospital for Children at Tufts Medical Center, brings up the serious long-term consequences of chemotherapy and radiation for young cancer patients, including lifelong learning disabilities and central nervous system risks, especially on active brain development. Still, says Klement, the treatments are “a way to keep the child alive.

“I think when you treat cancer, the risk-benefit ratio is skewed,” she continues. “You’re dealing with a child who might die versus a child who might end up with a lower IQ.”

As for the risks and benefits of medical marijuana, “I tell my patients to discuss it with me,” she says. “Parents know I’m not judgmental.” Sometimes there are reasons for medical marijuana not to be used, she says, but for the most part, “it’s quite a benign drug.”

Marinol has been around since the 1980s, and, like marijuana used as medicine and some pharmaceuticals prescribed to children with cancer, “there is very little information on it in pediatrics,” says Dr. Peter Adamson, chief of the Division of Clinical Pharmacology Therapeutics at the Children’s Hospital of Philadelphia and head of the Children’s Oncology Group, the largest organization in the world devoted exclusively to researching cancers in children and adolescents.

Grinspoon and other doctors say that synthetics based on marijuana are not as effective as the real thing; that’s because the plant contains more than 80 compounds, giving it more therapeutic properties than a drug like Marinol that mimics just one. “The major reason people use Marinol is because of the law,” Grinspoon says.

***

Shannon Maxim at her daughter’s grave.

Photo by Webb Chappell

Shannon Maxim at her daughter’s grave.

ABOUT AN HOUR AND A HALF after Maxim put the marijuana tincture into the tube running into her daughter’s stomach, they were on their way to Boston Children’s Hospital for a blood transfusion. When Maxim stopped at McDonald’s for coffee, as she always did on the way to the hospital, she got a surprise. Hailey asked for a Happy Meal. “That was the first day in two months she asked for food,” Maxim says.

Hailey didn’t want to eat right before her transfusion, but she asked her mother to save the food for later. On the way home, though, Hailey fell asleep. Maxim wasn’t surprised; her daughter was always tired after the trip and the procedure.

When Hailey briefly woke up, though, she was no longer hungry. “Looking back now,” Maxim says, “I had never asked how long the effects last  . . . [and] I didn’t think to give her another dose.” The next few days were intense. Hailey got sicker and sicker. She passed away on July 28.

“I didn’t try to give it to her again,” Maxim recalls. “The only thing that I look back and say I wish I’d done something different is I wish I started medical marijuana sooner, I wish I continued it, I wish I wasn’t so scared.”

Medical marijuana ought to be easy to bring up with your doctor, Klement says. “You’ll know immediately. If he or she is against it, you’ll know, and you’ll know if they are for it. Just as there are different types of patients, there are different types of doctors.” Cayenne Isaksen, director of public affairs at the Department of Children and Families, stresses that children are dealt with on a case-by-case basis and that the agency could intervene only if it received a report of child abuse from a doctor, teacher, or other person who had witnessed, for example, that medical marijuana was being administered inappropriately.

Yet the fear Maxim describes is something parents are still dealing with. No parent of a Massachusetts child currently being treated with medical marijuana who was contacted for this story would speak on the record or even anonymously, out of fear of losing custody of a gravely ill child.

Where medical marijuana is most beneficial, all of the doctors interviewed for this story agree, is for nausea and vomiting and in alleviating the anorexia of a disease like cancer by stimulating appetite.

“I’m not ashamed of my story,” Maxim says today. “We had a positive experience, and we never got to see how much further it could’ve gone.”

Valerie Vande Panne is a freelance writer in Cambridge. Send comments to magazine@globe.com.

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