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.
“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.
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.Continued...