The diagnosis of a low-grade, slow-growing, optic pathway glioma (OPG) brain tumor in eight-month-old Sophie Ryan was eventually realized with sobering facts. Success rates are high, but doctors said Sophie would be completely blind in her left eye, and partially, if not completely blind, in her right eye.
Studies found within the National Institute of Health came up short on OPG, providing little insight as to the cause of the rare disorder comprising five per cent of childhood cancers.
According to cancer.org more than 4,000 central nervous system tumors are diagnosed a year in children and teenagers in the US, with three out of four children surviving at least five years after their diagnosis. Brain and spinal cord tumors are the second most common cancers in children (after leukemia), accounting for one out of four childhood cancers.
Months of Misery, Then Slight Improvement
Thirteen months of chemotherapy was recommended for infant Sophie, with the dismal promise of the tumor shrinking only slightly as a best-case scenario. Her parents Tracy and Josh took a serious look at the alternative therapy of cannabis, with a nod from Sophie’s oncologist.
After creating the Prayers for Sophie Facebook page, a friend put Tracy in touch with celebrity and cannabis advocate Ricki Lake, who was filming a documentary about cancer, cannabis and pediatric patients with filmmaker Abby Epstein. “I was originally inspired to try for a natural birth after watching The Business of Being Born, so I knew if these ladies were now focused on a film about cannabis, there had to be something to it,” said Tracy on youshareproject.com.
Soon Lake and Epstein were networking for Sophie, putting Tracy and Josh in touch with some of the top oil makers and experts on cannabis as medicine in the state, prompting Tracy to share the wealth by creating CannaKids, an informational portal and oil resource for caregivers of kids with cancer and other serious ailments.
CannaKids Creates Miracles
On savingsophie.org, Tracy lists more than 155 studies proving cannabis is effective in killing cancer cells, with just 3.8 per cent of government funding spent on pediatric cancer research. With 15,780 children diagnosed each year, it doesn’t take much to realize something is wrong.
Through their own research and in working with experts Tracy and her team created organic, solvent-free CannaKids Honey Gold Cannabis Oil. “We work with hundreds of patients directly affected by cancer, epilepsy, and other childhood illnesses by informing them on the beneficial uses of cannabis oil,” said Tracy. “Three different doctors told one three-year-old child’s parents with a brain stem tumor that chemo would not work and they could not save her life. A few months after reaching a medicinal cannabis dose, the parents opted to try chemo, even though doctors said it would not shrink her tumor. After only 10 weeks of using cannabis oil and chemo the tumor is now 50 per cent gone.”
Working up to just a tenth of a gram initially, due to unknown factors of psychoactivity with THC (tetrahydrocannabinol), Tracy said Sophie did remarkably well, with the only side effect of Sophie being a little sleepy, which faded as she became used to the oil. Now at a much higher dose of around 300 milligrams of CBD, 100 milligrams of THC and 50 milligrams of THCa, Tracy shared, Sophie’s only side effect is hunger.
“When parents come to me with concerns in relation to the THC getting them high, I remind them what it is these doctors are putting them on–these horrific opiates and damaging pharmaceuticals that are not only damaging to their organs, but are highly addictive,” said Tracy. “The oil also protects their bodies from the chemotherapy drugs themselves that are highly damaging to the immune system.”
So Close to Success
Sophie's treatment continued with both chemotherapy and cannabis oil, with every follow-up scan, the tumor presented smaller and smaller–an anomaly with this type of tumor. “At just nine months of treatment with both chemo and the oil, the tumor was 50 per cent gone,” Tracy shared. “By 13 months, it was 90 to 95 per cent gone. We were told initially the cyst would remain and it’s gone, too. We were told she would lose her vision, and it’s saved. The doctor’s themselves agreed the cannabis oil destroyed her tumor.”
Chemotherapy was stopped in November 2014. With a 95 per cent shrinkage rate, the downside is an average of 75 per cent of cases reoccur. Sophie’s first scan post-treatment showed tiny specs of cancer in an area where there was nothing prior, prompting chemo a second time. After getting a second opinion the Ryans were told that Sophie should have never been taken off of chemo in the first place since her tumor at the time was still shrinking on treatment, hence this new recurrence happening so quickly.
The good news is that because of Sophie’s cannabis use her immune system is stronger than ever during the traditional treatment of chemo that typically knocks an adult to the ground with infections, pain, waste-away and more.
Proof, Protocols & Patents
According to a paper published in the National Institute of Health’s site, via the National Cancer Institute (updated January 2016), help from cannabis with side effects of chemotherapy are listed, with nausea, waste-away and pain a given. And though Israel first reported THC putting tumors into remission in the late 1960s, only recently has the institute added verbiage stating, “Cannabis has been shown to kill cancer cells in the laboratory.”
“Her immune levels hardly ever drop below a normal range on the oil. And if they do, they are in the upper range of low,” Tracy reported. “She’s the only child during chemo breaks that doesn’t have to have her labs drawn.”
Doing laboratory work can often be difficult for anyone. For a child, it can add to the physical and emotional scars already received from the ailment itself. Tracy said due to the persistence of the cancer, she has what is called a porta-cath, or portable catheter, in her chest where chemo drugs are delivered. “You can see all the thousands of tiny holes in her chest from the thousands of needle sticks she’s had,” said Tracy. “I’ve had to hold her down while they put this big plastic thing on her chest, with an IV running out of it, and blood running in a tube right in front of her face. Yes, labs are very traumatic.”
When asked if they are able to do the cannabis treatment without the chemo, Tracy said it didn’t work for Sophie. “Sophie is CannaKids’ only optic pathway glioma patient who hasn’t responded to just the cannabis oil off-treatment,” she said. “We are trying to get to the root of the problem to find out why her body doesn’t respond to a maintenance dose of oil to keep the cancer away. We are working with researchers in Israel now to determine which cannabinoids and terpenoids are going to most effectively kill Sophie’s tumor.”
Building a Brain Trust
While Sophie continues treatment with both chemo and cannabis, Tracy’s latest project is to bring together what she calls a brain trust of doctors, scientists and researchers from around the world.
Sophie’s brain tumor sample has been sent to Israel with the hope that they will find a perfect match from more than 150 strains of cannabis, with the goal of putting Sophie’s cancer into remission for good. “I am determined to keep my child from having to go through this any longer,” said Tracy. “And I’m just as determined to help keep other children from going through this ever again.”