Northeast Tarrant

Grapevine girl heads west, hoping marijuana will ease her pain

Grace Lummus-Nickell is 10 years old and has lived most of her life in pain.

She was born with McCune-Albright syndrome, a debilitating bone disease that has resulted in Grace having 10 surgeries, including the insertion of three titanium rods in her right leg.

The pain medicine she takes tends to make her sick and feel worse, she and her mother, Suezanne Lummus, said.

So earlier this month, the mother and daughter moved from their home in Grapevine to a rural area not far from Sacramento, Calif., where they are seeking a doctor to prescribe medical marijuana or a therapeutic derivative to make Grace’s pain manageable.

“The last surgery she had was the worst pain I’ve ever seen anyone in in my life,” Lummus said. “And now they’re saying that she has to have surgery on her other leg. If that has to happen I want her to be in a state where we can be under a doctor’s care and someone can help us through this process, which I understand can be tricky.”

After her most recent surgery in March 2015, Grace was prescribed Oxycodone and Valium as needed for pain, according to medical records provided by Lummus. Grace was also prescribed Zofran for nausea and a stool softener to counteract the effects of the narcotics, Lummus said.

“Nothing has really worked to make this any easier,” Grace said. “None of the medicine they give me seems to help very much. The medicine makes me feel weird and it kind of makes my stomach hurt. I think they should make it [marijuana] for everyone who has problems.”

Said her mother: “That’s the madness. They prescribe her pain meds, which tear up her stomach lining and make her constipated, then prescribe her more drugs to mask the side effects. And even at the high doses that they prescribe, she’s still in pain.”

Marijuana use, for recreational and most medical reasons, is illegal in Texas and many other states. Marijuana use, in varying degrees, is legal in 24 states, including California, where the medical marijuana industry is thriving. And an initiative has been proposed for the November election that would allow California voters to OK recreational use of marijuana.

In Texas, state lawmakers last year approved the legal use of cannabis oil for patients with intractable epilepsy, but it will be at least next year before those products will be available to the nearly 150,000 residents who might benefit from the treatment.

But because the law is written specifically for medical marijuana prescriptions for epileptics, Lummus and others who want access to this treatment option are forced to look outside the state if they want to operate within a legal framework.

A booming industry

Americans spent $5.4 billion on legal medical and recreational marijuana last year, according to estimates from ArcView Market Research and New Frontier Data, two marijuana industry market research groups.

The total includes over $1 billion in medical marijuana sales in California, nearly $1 billion in legal marijuana sales in Colorado, and more than $500 million in sales in Washington state.

It’s impossible to know exactly how many families have left Texas to try and get medical marijuana products legally, said Heather Fazio, Texas political director for the Marijuana Policy Project, a nationwide advocacy group that lobbies for less-restrictive marijuana laws.

But Fazio said she has seen postings from at least a dozen or so families on social media platforms saying they have left Texas for better medical options, and she bets there are many more. According to Fazio, the Texas law allowing legal medical marijuana use is too narrow in that it applies only to families with epilepsy sufferers.

John Malanca, founder of United Patients Group, a California-based organization dedicated to providing information about medical marijuana, said about 5,000 families call them each year looking for advice.

“People are calling us because they have family members who are chronically ill and scared to death,” Malanca said. “I speak with clergy, police officers, lawyers and others from all walks of life who have turned to medical marijuana for treatment.”

Finding freedom outside of Texas

While seeking relief outside of Texas, Fazio said there are legal side effects for families that leave.

Some families are afraid to bring their children back to Texas for extended visits because of issues that might arise with agencies such as Child Protective Services or federally assisted housing programs, Fazio said.

Families are also being split, she said. While sick members of a family seek help outside of Texas, other family members often stay at home to work, Fazio said.

“This is disappointing,” Fazio said. “Texas has long been the focus of individual freedoms and keeping government out of our affairs. Now we have all these people having to uproot themselves to seek freedom outside of Texas.”

For Grace, the move to California has nothing to do with politics.

Grace said she was apprehensive about uprooting her life to make the move and hopes the move is worth the trouble.

She just wants to get better and live as normal a life as possible, which includes going to school and hanging out with friends.

Lummus said her daughter has a strong spirit. She practices yoga and writes and sings songs as a creative outlet.

“One thing, she’s developed some positive coping skills,” Lummus said. “She had to or else she’d be going through constant emotional meltdowns. No one wants to be around someone like that. With everything that she’s gone through, I amazed that she can still smile.”

This report includes material from the Star-Telegram archives.

Mitch Mitchell: 817-390-7752, @mitchmitchel3