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Mom: North State marijuana grower helps treat child's cancer
Record Searchlight (Redding, CA) - 5/30/2014
May 30--Suzetta Vonzell credits medical marijuana growers like James Benno for helping save her 2-year-old son's life.
She said she tried everything doctors suggested before taking a chance on medicinal cannabis. Her son Spencer Koptis did not respond well to chemotherapy aimed at treating a particularly aggressive form of brainstem cancer known as pilomyxoid astrocytoma. During his 10th round of treatment in May 2013 he went into anaphylactic shock and nearly died.
"It was almost like watching him die in my arms, and I knew then I would never do another drop of chemotherapy for my kid," Vonzell said. "I decided that if I wasn't going to do chemo then I was going to have to do whatever I could."
It took copious amounts of research and months of experimenting with different types of marijuana before Vonzell found an oil mixture that she says worked for her son. After a few weeks of the right concoction he started to show signs of improvement.
"Within two weeks he could sit up on his own, he could scoot again and within a month he could start using his hands (again), and his speech took off," she said. "Literally, I went into the neurosurgeon's office and he said the tumor in the pineal region was pretty much gone -- and it was a big tumor."
Other smaller tumors along his spine showed signs of regression as well, and Spencer continued to regain the use of his arms, speak more clearly and make other advances in the following months.
Today Vonzell is continually experimenting and honing mixtures that work for the young tike. But gaining access to specific marijuana strains grown to medical standards has continued to be a challenge for the Palm Springs mother. Donations from growers, including James Benno, have helped make the treatment possible and affordable, she said.
This year Benno was growing a special strain for Spencer and other patients that Vonzell said had proven effective for her young child. But after a raid on his Happy Valley home on May 19 that left Benno and his two sons behind bars, and his garden uprooted, Vonzell is now worried Spencer will not have access to the rare strain known as API that she says has worked for him so well.
Spencer Koptis has had a rough early life. At 15 months old he was diagnosed with pilocytic astrocytoma and later pilomixoid astrocytoma, a more aggressive and less understood but similar form of cancer. Tumors formed and swelled along his spinal cord and in his brain.
About 33 percent of patients with the more aggressive cancer die from their condition, according to a 2004 review published in Medscape General Medicine, but Spencer faced a bleaker prognosis because of his tumors' locations. Surgery, the standard and most effective form of treatment, was not an option.
To complicate things, a brain biopsy in early 2013 damaged Spencer's sixth cranial nerve, she said, causing him eye problems and limiting the use of his arms. A month later he started chemotherapy treatment, and side effects soon followed.
"Within the first three weeks he ended up needing a blood transfusion," Vonzell said. "His hair was falling out, he was miserable, his fingernails started falling off and I didn't know what to do."
After his brush with death last May, his mother opted out of more chemotherapy and started him on small doses of cannabis oil low in tetrahydrocannabidinol, or THC, the psychoactive ingredient that gets people stoned, and high in cannabidiol, also known as CBD, a cannabinoid in marijuana some studies have linked to anti-inflammatory and anti-anxiety properties.
After nearly three months of treatments, MRIs showed the tumors had not grown in size, but Spencer's condition still wasn't improving.
"Naturally, being a parent I wanted to protect my child from side effects like (from) the other drugs, and I didn't want my kid to get high," Vonzell said. "At the same time, I decided that high-CBD treatment just wasn't cutting it."
With a little help, Vonzell decided to switch up Spencer's regiment and work in mixtures that were high in both CBD and THC content. Some lab tests had shown promising results in mice, reducing tumor size and inhibiting their growth with high-THC treatments, according to research reports published in the National Toxicology Program and Cancer Research medical journals.
While research on cannabis' potential to help Spencer's particular type of brain cancer is scarce, a pair of case studies published in the April 2011 edition of the academic journal Child's Nervous System showed a correlation between cannabis use and a reduction in size of pilocytic astrocytoma tumors, "raising the possibility that the cannabis played a role in the tumor regression."
According to Vonzell, Spencer has seen similar improvements. Within two weeks she started seeing results, and an MRI a few months later showed drastic reductions in the size of a large tumor near the top of Spencer's spinal column and many smaller ones along his spine.
Spencer's neurologist did not respond to calls seeking comment.
Anxiety and uncertainty has become a way of life for Suzetta Vonzell. In addition to her son's health, she worries child protective services may come after her for refusing chemotherapy treatment, even after doctors told her it likely would not cure him, she said. That happened recently to Colorado Springs mother Sierra Riddle, who moved to the state to seek out medical marijuana to treat her young son's cancer and opted out of chemo, according to media reports.
Vonzell noted that not everything is great for Spencer. While a number of tumors have shrunk and some disappeared, one near a shunt in his brain showed about a millimeter of growth on his latest MRI.
"I only mention that being fully open and honest with people. You can't just use cannabis oil and expect that to be enough," she said. She credited allowing Spencer to have more sweets and other not-so-healthy foods in his diets once he started to improve as potentially playing a role in the tumor's growth. He still attends physical therapy four times a week, takes daily vitamins and Vonzell does her best to keep him on an organic diet of fruits and vegetables -- not an easy task with a 2-year-old.
But much like the tact taken by James Benno, Vonzell said staying silent about a treatment that has helped for her son -- no matter how controversial -- was no longer an option.
"Children's lives are at risk," she said. "It's unfortunate, but if nobody speaks up then nothing will be changed."
She credits a largely unknown network of people, mostly mothers and grandmothers, for helping her understand more about cannabis and connecting her to medical marijuana growers she could trust. Some people have dubbed it the "undergreen railroad," alluding to a now infamous secret network that helped lead enslaved blacks to freedom before the Civil War.
"It's just a group of people that care about children. Really, it's a terrible sin that anyone would stand in the way of these children getting medicine," said Marcia Jones, a Shasta County patient who said she was not a member but served as a spokeswoman for a local group of advocates who helped connect patients -- mainly sick kids-- with North State growers.
Jones, a friend of Benno, said his garden was purely for medical purposes, and material police have said was used to manufacture honey oil was in fact used to produce Rick Simpson oil, the type used for medical treatment. Benno has said he was growing 99 plants to split among eight patients.
Spencer's dosage has increased with time, and he now takes about a gram of oil before bed each night. Vonzell said the family's situation did not allow for her to grow medicine for Spencer, and the costs at collectives were prohibitively high for obtaining the amount of marijuana needed. She said it takes about a pound of processed marijuana to make a two-month supply of the oil at his current dosage, which could cost between $2,000 and $4,000 from a dispensary.
"It would be impossible. Without donations it wouldn't happen for us at all, and that's why it's so important to us to have people like James (Benno) that grow compassionately," she said. "My child means the world to me, but for every other parent their child means the world to them. They need access to the medicine just as much as Spencer does."
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