A mother’s love extends beyond finding a cure for her daughter to healing the world
“There’s not a Mother’s Day that goes by that I don’t find myself in tears. I could have lost my child. This could have ended up being a more malignant tumor, she could have died before she was two, her brain surgery could have gone bad, the staph infection she had at one point could have spread to quickly and could have killed her. My child could be feeling around in the dark right now, she could be completely blind, she could have onset puberty, there are so many things that could have happened to my baby,” an emotional Tracy Ryan, 42, recounts with a catch in her voice as she lists off just a few of the medical maladies her four-and-a-half-year-old daughter, Sophie, has endured.
Tracy Ryan’s nearly five-year journey of hospitals, doctors and cancer treatments began on June 23, 2013 when an 8-1/2-month-old Sophie was diagnosed with a low-grade, Optic Pathway Glioma brain tumor. The first clue something was amiss had only happened three days earlier when Sophie had an MRI scan after nystagmus, or shaking of the eyeball, presented in her left eye.
Sophie’s tumor was diagnosed as slow growing so doctors recommended that Ryan and her husband Josh start their daughter’s treatment with an observational period to watch and wait for two-and-a-half months and see if the tumor stopped growing and even regressed. During that time, “we started her on a very low dose of cannabis, a 2:1 THC to CBD ratio, and we were hoping maybe, just maybe, we would get lucky and she would have no need to do chemo because thinking about putting that kind of toxicity into an eight-an-a-half-month-old is earthshattering for a parent,” recalls Ryan. “We started her very slowly so she didn’t feel any psycho-activity and she never had any negative side effects from the cannabis at all, she was smiley, and happy and hungry.”
The nystagmus in Sophie’s left eye started to go away so the Ryans stopped giving her cannabis oil because they thought the tumor was shrinking. But, unfortunately, the tumor hit a very aggressive growth spurt and it was growing toward the back of her brain and putting pressure on her optic nerve causing the nystagmus to start growing again.
“After another MRI, the brain surgeon told us Sophie was going to lose her vision, that her left eye would be completely blind and her right eye would be grossly compromised. The best case scenario was to prepare ourselves for full blindness. He told us there was 100 percent chance this would happen because chemotherapy would not shrink her tumor fast enough to release the pressure off of those nerves to save her vision,” recollects Ryan.
Sophie’s doctor decided to biopsy her tumor to ensure it wasn’t a more terminal tumor based on how fast it had grown. Ryan asked what the doctor meant by more terminal and “he said if this comes back as a more malignant tumor your child won’t live to see her second birthday. We were devastated, not only were they going to take a huge chunk of her skull off, but we were also now faced with the possibility of teaching our small child Braille and finding a blind school for her.”
The Ryans moved forward with the biopsy, of which, doctors took the very smallest piece that pathology would allow because the tumor was wrapped around Sophie’s nerves and brain. Luckily, the news was good and it ended up not being the more aggressive tumor.
SEEING THE LIGHT
Before Sophie started the 13-month regimen of chemotherapy doctors recommended following the observation period, the Ryans opted to titrate up the cannabis oil to a bigger dose. From the very first scan the Ryans saw results. “The doctors were very surprised because they said if we were going to see shrinkage, we shouldn’t expect to see it on the very first scan and we got incredible results on that very first scan and we continued to see incredible results.
“Our daughter sees incredibly well. We do believe she may have some color deficiencies because that’s the first thing to go when the nerves are starved but to look at her and watch her interact is to watch a normal child. She may have some slight deficiencies but we can’t tell yet because she is so young but, for all intents and purposes, she sees fantastically and she is nowhere even remotely close to a child that is blind or even has severe detriment to her vision.”
Ryan attributes Sophie’s success in beating back cancer to a combination of cannabis and chemotherapy. “It really is the entourage effect between those two and where we have seen so much synergy. We have always used them together, in concert with one another. The science is not there yet for people not to use Western medicine. Western medicine can work and save lives, it’s the toxicity that you really have
to worry about. But if you can keep the patient healthy
and eating and thriving, which cannabis does, then their
body is so much stronger and so much more capable of fighting cancer.”
Although Sophie has taken cannabis oil since she was nine months old, her tumor has recurred twice since the resection on her brain when she was a one-year-old. “We believe there are new mutations in there, we hope that this formulation will be strong enough to work even better and in concert with her existing medications that she is taking for even more profound success,” says Ryan, who adds she has been busy trying to find answers.
THE BIRTH OF CANNAKIDS
Tracy Ryan has indeed been very busy, not only finding answers as she navigates her daughter’s road to recovery, but also sharing what she has learned about cannabis. “It’s a secret I couldn’t keep in good conscience as a parent and continue to let other parents go through these horrifically toxic treatments without letting them know there is an option that could potentially help their child stay healthier.”
Ryan decided to share the secret in the best way she knew how. As an owner of a social media and branding agency, her background in marketing made it easy for Ryan to start a California-based advocacy company called CannaKids in March 2014 and get the word out. “I saw a vacuum in that market, I saw there wasn’t enough quality educational guidance or medical professionals,” Ryan relays of cannakids.com. “I believed this was a path I was supposed to be on and felt like I needed to dedicate everything I had in bringing this plant to the people.”
Ryan had only two goals when she started CannaKids. The first was to find a cure for her daughter. The second was to conduct pediatric clinical trials. She needed for the second to happen in order to achieve the first.
“My daughter is the driving factor in what we are doing with CannaKids — trying to find her a cure or at least something that can help get her off of these medications. We want to stop her from having anymore bumps in her road,” Ryan explains, continuing, “because we are so focused in helping her, we are doing anything we can to partner with the world’s foremost researchers and hospitals and, in turn, all of these other children and families are benefitting from this because we are not just studying Optic Pathway Gliomas, we are studying all cancers. We are studying all indications when it comes to pain and nausea, migraines and fibromyalgia, autism and epilepsy, and because this one child was sick we are now working toward helping anyone that this medicine can serve.”
Although Ryan has her goals in sight, she and Sophie still have some work to do. “We don’t know what the right strain is for Sophie, we don’t know what the right combination of cannabinoids, terpenoids and flavinoids are in order to target those genetic mutations in her tumor to stop them from feeding it but we are getting close,” says Ryan, who took a sample of Sophie’s tumor to Israel in April 2016 so her genetic mutation could be studied. “The research scientist had to do a genome sequence of that tissue to see what mutations existed in that cancer sample. Now they are sourcing those exact same mutations and they will rebuild her cell type in their lab and they will then run it through a machine. They have sequenced over 450 strains of cannabis in Israel and they will run all of these different strains against her tumor sample to find the one that will kill her sample and destroy that cancer. Then they will be able to look at that strain and understand what formulation in that plant is responsible for that cell death and that recipe could be 15 ingredients or less. They will then hand me that recipe and I will work toward recreating that recipe here in our own lab and we can break the plant apart and reassemble it.”
Once the research is finally completed, “We will try this on Sophie and she will be the first human patient in the history of the world, as far as I know, to have a cannabinoid medicine designed especially for the mutations in her brain,” explains Ryan.
With the potential of what is possible in reach, Ryan and her team at CK Sciences are in the beginning stages of partnering with one of the top pediatric hospitals in the country to do seven different clinical trials in live humans. “We are in the planning stages with one of the top hospitals in the country for peds trials and the goal of these doctors and research scientists is not just to work on these seven indications, but for this to be a starting point for us. Once we show efficacy post-trial, eventually we will find a way for cannabis to work for every single disease in the hospital,” she explains.
GETTING IN THE OIL BUSINESS
In addition to trials and scientific research, Ryan also wanted to implement ideas she had for refining medicinal cannabis and its delivery method so in March of 2015 CannaKids rolled out its own line of medicinal cannabis oils. Her team started “by diluting it down with MCT oil, it helps with absorption levels and the cannabinoids because cannabis is fat soluble,” Ryan says of CannaKid’s line of oils and tinctures. “Additionally, our scientists have designed a profile of natural organic all-natural flavoring with a slight taste of bubble gum and grape for our oils.”
As for the delivery method CannaKids uses, Ryan says, “It’s so much easier, we just have a little reducer cap in the top of our bottles and you stick a syringe into the center like a Tylenol bottle. You turn the bottle upside down and just pull out the dose you need. You give the dose and they chase it with some sort of fruit juice.”
Using cutting edge research from the trials in combination with Ryan’s business savvy, the future of CannaKids has the potential to make a huge difference in a lot of lives. “In my opinion, with the trajectory we are on now, we are going to become a brand that’s known for medicine that truly works for specific indications. Our goal is to become the foremost leader in pediatric and adult disease by rolling out a product line based on research that is specific to a patient’s genetic makeup to the mutations in their body.”
It can be overwhelming to listen to Ryan as she extends her knowledge — from trials and genome sequences to fractionated coconut oil and ketogenic diets but remember she, too, was once like any other parent just starting to navigate a child’s new medical diagnosis and treatment.
“We knew nothing about lab testing, we knew nothing about different profiles, we knew nothing about terpenes, we were clueless beyond clueless. Trying to find information about cannabis was impossible because it just didn’t exist and that’s one of the reasons we started Savingsophie.org,” says Ryan of the foundation she also started. “At savingsophie.org we have this incredible resource center with cannabis studies so you can find a 100 different research articles and papers along with other educational blog pieces that talk about cannabis and what it does, how it treats different diseases and the science behind it. It’s much easier to find information now but it hasn’t always been and we wanted to take that pressure off of families who are looking for answers and are already dealing with so much stress and agony of having a very sick child or loved one.”
Nobody knows that utter feeling of helplessness better than Ryan. “If I had a choice and I could go back and do it all over again, I would always choose for Sophie to be healthy. But to have the silver lining we have had and been given so many gifts along the way, I am truly grateful to God and to everyone who has helped us to get here and all the people who came before us and all that they have passed down for there to be research on the medicine that has helped my child. I feel like I am living in a dream most days, I truly do. And it’s one that I am happy to wake up to as long as my kid stays healthy.”
This story was originally published in elevate NN magazine.
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