From Tragedy to Triumph: The Tracy & Sophie Ryan Story, Cannabis Oil, and the Birth of Cannakids
A Tragedy Meant for Greatness
After the initial shock and disbelief of finding out your child has cancer dies down and you start to actually process that earth-shattering, life-changing information, the first questions you find yourself asking are “Why did this happen? Why did this happen to my beautiful, innocent child?” But I don’t know that every one of us who asks these questions will ever get a clear answer. What I can say with great confidence is that your child isn’t being punished for something you did. I know because I just spent a very long time incorporating the explanation behind that here until it got long enough to necessitate its own article… So stay tuned for that. For Tracy Ryan, her husband Joshua, and their adorable daughter Sophie however, they’ve certainly received their answer, and it’s nothing short of making the world a better place for those who live in it.
As I told Tracy when I interviewed her recently, the similarities between her family’s story and our own were breathtaking. Seeing The Business of Being Born changed the way both of our families looked at childbirth and inspired us to strive for a natural birth, with Tracy and Teddy (my wife) both experiencing rather misery-free pregnancies. We were both told there was nothing wrong initially when bringing our children into the doctor with concerns, and Tracy and Teddy both had fellow members of their “mommy groups” encourage them to press harder to be absolutely sure it wasn’t something worse. We both haven’t necessarily felt the need to follow the rules handed down to us from one place or another and consequently were immediately dissatisfied with the answer that chemo was the only option when our children were diagnosed with cancer, proceeding to go days without showering, changing clothes, or even eating much to maximize our time researching what else could be done. We both spent our children’s first birthdays in the hospital.
Most importantly, we both had a sense early on that our personal tragedies were going to be used to help many others. Paraphrasing Tracy’s sentiment on the matter, “I had this whole body takeover feeling that went from the top of my head to the tips of my toes. I felt in my gut and everything I know to be in this life was that Sophie was sick for a reason. I looked at my husband one day and said ‘Sophie has a message and we’re her messengers. I don’t know what that means or what that message is yet but I believe that she’s going to be just fine and that something very beautiful is going to come from this tragedy.’”
Finding out Sophie Has Cancer
Now let’s back up a bit…
When Sophie was a little over eight months old, Tracy began to notice her left eye periodically shaking from side to side. This is called nystagmus and can actually be caused purely by a developing brain, so the concerns from the pediatrician and even neurologists she saw initially were very low. Fortunately, Sophie’s ophthalmologist was also a new mom with her motherly instinct in high gear so she overrode neurology and pressed to get an MRI done immediately. Now looking back, Tracy also recalls that even earlier on, she had noticed in that same eye Sophie would squint a little more than the other when smiling but of course didn’t think anything of it.
Sophie’s MRI was scheduled for a Friday morning and from all of the reassurances the Ryan family were getting, they were more worried about it going smoothly than what it might show. Fast forward to Sunday morning when Sophie’s pediatrician would call to explain to Tracy that there was indeed something on her daughter’s scan, an optic pathway glioma. A brain tumor so rare (only about 5% of all childhood brain tumors are OPGs, 1-2% in a child as young as Sophie was at the time) he actually had to do an internet search to tell them anything about it.
What he and subsequent oncologists would tell her is that an OPG is a slow growing tumor that is associated with a 90% survival rate, but that chemo is the “only” line of defense and does not actually even work to shrink the tumor, just hopefully arrest its growth. She would later come to find there is also a 70% recurrence rate, requiring more chemo.
Overnight, Tracy became a full time cancer researcher, doing nothing but try to find a better way to help her daughter day in and day out. A few days in, she created the Prayers for Sophie Facebook page. Social media just happened to be her business, as she and Joshua had run a successful online marketing firm up until this point. Between her social media prowess and the help of her online mom groups, the page quickly exploded with followers, many of whom reached out to introduce Tracy to even more ideas on how to treat her daughter than she had come across to date.
You Want Me to Give Cannabis to My Child???
Tracy began getting extremely frequent suggestions that she use cannabis oil on her daughter. Suggestions that Tracy would initially immediately dismiss because, well, everyone knows that marijuana is bad and giving it to a kid would just be plain crazy, right? Mind you, this was about two and a half years ago when cannabis as a standalone cancer treatment was not nearly known to the public to the extent that it is today. Pre Sanjay Gupta, as Tracy likes to put it (if you haven’t seen the CNN special Weed, certainly worth the watch, although I still consider Run From the Cure to be the all-time classic cannabis oil cancer treatment documentary… You can find both in our documentaries section). That is, until she ended up getting in touch with Ricki Lake and Abby Epstein, the makers of The Business of Being Born, the very same documentary that completely changed the way she had looked at childbirth. They just so happened to be making a new one on, you guessed it, cannabis oil to treat childhood cancer.
It was at that point Tracy and Joshua couldn’t help but give cannabis oil an honest look. Ricki and Abby sent her all the data they had on it and put them in touch with several scientists. After diving deep into the research, as Tracy put it, “I just couldn’t find anything wrong with it,” a sentiment shared by pretty much everyone who looks into this with an open mind.
It didn’t take long for Tracy to decide Sophie needed to be using cannabis so she began working with these scientists to develop a treatment protocol for her. It was their first time dosing a child this young and they started out very conservatively, a tenth of a gram of 45-50% oil. Interestingly, the Ryans were not required by the hospital to put their daughter on chemo right away. As an optic pathway glioma is a very slow growing tumor, and if it was caused by a genetic mutation called NF1, there was a chance it could go away entirely on its own (they didn’t know one way or the other if it was at the time, they would come to find out later it wasn’t). Sophie’s oncology team said that although they didn’t know anything about cannabis, they trusted Tracy and if she had done the research, they were alright with putting Sophie on a “stay of care” and letting her try just using the oil. I had to laugh at that point when I told Tracy this is where our stories differ, just a little bit to say the least.
Oh, That’s Why…
Over the next two and a half months, the nystagmus in Sophie’s eye had gone away, so they all thought the oil was working and kept her at the low dose. Unfortunately when they got her next scan, the reality was that the tumor had happened to hit a growth spurt towards the back of her brain, pulling it away from her eyes, which was actually what caused the shaking to stop. The doctors immediately scheduled a brain surgery to take a sample of the tumor to determine if it was malignant or benign, and told Tracy if it came back as malignant, her daughter would not have much longer to live. Fortunately, she got the call that it was not malignant. Unfortunately, the neurologist that did the brain surgery said that starting chemo still was not going to shrink the tumor fast enough, if at all, and there was no chance of saving her left eye and her right eye was going to be compromised if he did not completely take it out as well so they likely had full blindness to look forward to.
The oncologist also let Tracy know that with these tumors, even on chemo, most children never see any shrinkage. If they do, it will usually take a couple months to begin, then shrink somewhat for six months or so and then plateau, never to shrink again from there on out.
Tracy consented to the chemotherapy as it was clear they needed to do whatever they could to save Sophie’s vision, but she also worked with the scientists to start upping Sophie’s dose of cannabis oil quite dramatically. Not only did the Ryans see shrinkage at the first scan after two and a half months, they saw thirteen solid months of shrinkage. Sophie also initially needed blood transfusions after starting the chemotherapy. Traditionally, once you start needing these you don’t stop until you’ve finished chemo. Sophie’s bone marrow actually repaired itself while in the midst of chemo, something the doctors told Tracy was “medically impossible.” Sophie is now three years old, and still has perfect vision.
Sophie’s story is still being written. After the long run of shrinkage, the doctors took Sophie off of treatment as protocol dictated, which unfortunately prompted another growth spurt of the tumor. She was put back on treatment and is now experiencing the same sort of success she had initially. Tracy is not shy about saying she believes that in Sophie’s case western medicine is needed alongside cannabis to succeed, but on the same token, after being told by so many doctors about so many aspects of Sophie’s recovery that they had never seen or heard of anything like it, this combination she just happened to stumble upon is something very special. Sophie has never needed another blood transfusion, she has a full head of hair, and for the most part feels just fine day to day, even undergoing chemotherapy.
The Creation of CannaKids and So Much More
It was all of these miraculous results that prompted Tracy to start a Facebook group (which is how we ended up meeting) to guide those in need, especially parents of children with cancer, through using cannabis oil for themselves. It didn’t take long for the same stories of disbelief from doctors as to how the people in this group were experiencing their own unheard of results, many without any western treatment at all in fact, to prompt Tracy to go a step further and actually begin providing this medicine to patients herself. And that is how the CannaKids California Cooperative was born.
Tracy is now able to formulate her own oils for Sophie and all of the patients she is working with, and for lack of a better term, she’s doing some really exciting stuff. I believe we may actually have the privilege of being the the first to announce that Tracy has teamed up with the man who holds the copyright for EMAIL (yes, email) who has developed a “computational platform for scalable integration of molecular pathway models.” I might be butchering this a little bit, but to my understanding, he’s basically using big data to map the body’s cellular receptor system and measure exactly how various molecules will interact with it. This includes the endocannabinoid system, which is the receptor system in all of our bodies specifically for the cannabinoids found in cannabis. Kind of makes you think it might have actually been put here for a reason, doesn’t it?
Sophie will be the first pediatric brain cancer patient to be modeled using this platform. What it will allow them to do is take all of the medications – western, cannabis, and everything else, Sophie has received since the beginning, and find out at what levels they would produce their most positive, synergistic effects. After Sophie, they plan to model other optic pathway glioma patients and develop specific protocols, and from there begin modeling other types of pediatric and then adult disease. These models will serve as clinical trials to determine the exact levels of cannabinoids, CBD and THC being the two primary cannabinoids known for fighting cancer, and another group of molecules with a variety of healing properties known as terpenes found in cannabis and other natural substances, to incorporate for each different disease. I love nothing more than reporting on the hard science backing up natural treatments and am so excited to keep following along with Tracy’s progress in this area.
With all that promise of what’s to come in the future aside, Tracy is quick to point out that the “impossible” results her family is seeing today are by no means unique to Sophie. She sees first hand cannabis oil doing wonders for a large variety of children, and adults, with many different and diverse health challenges to overcome. She mentioned the story of AJ, who after being diagnosed with stage four osteosarcoma metastasized throughout his entire body, going through two years of chemo so intense they were causing his bones to become brittle and break routinely, and finally ending up getting sent home with 30 days to live and an arsenal of powerful pain medications just to see him through to the end from his doctors, was directed to Tracy. AJ was off of all medications in 30 days and showed no signs of cancer after 90 days. She also noted that many parents of children with neurological conditions will see them go from multiple seizures per day down to maybe one a month, if at all, when no drug has worked.
A Long Road Ahead
While incredibly inspiring, stories like these cause Tracy (and the rest of us) a great deal of frustration in light of the fact that this medicine remains illegal in so many states, not to mention its use or production is still considered a crime by the federal government. Every day, parents are told by a doctor that there’s nothing more he or she can do, your child is going to die, but if you try using this medicine, you’re going to go to jail.
Tracy has vowed to take this movement as far as she can, just as we’ll keep bringing you more success stories and information on proven natural treatments.
We got into so much more in our discussion than can’t be covered in one article (geeking out on cannabinoids and terpenes and different ratios for different diseases, exactly how Tracy mixes the cannabis oil with coconut oil and doses it out for easier delivery, what sort of diet she follows for Sophie, other natural treatments she likes, and so on), so we’re in the process of making the entire discussion available for you to listen to. If you’d like to know when we have this valuable recording up, please go to our homepage to sign up for our mailing list (if you haven’t already) and you’ll be the first to know when it’s available.
Bottom line, if you’re interested in more information on cannabis oil for any reason, I can’t think of a better person to contact than Tracy, which can be accomplished through the contact page at savingsophie.org. And be sure to catch her in Weed the People when it comes out!
God’s Peace and Godspeed.