This is not just another blog post. On the surface, it’s a story about hope and about the true essence of motherhood and fierce inner-strength. On a much deeper level, it’s a narrative about near death, illegal benevolence, law-making, and the healing power of cannabis.
This is a story the world needs to hear. This is Rylie’s Story (as told by her mother Janie Maedler).
HOW IT ALL BEGAN
It was the summer of 2013 when our family life was changed forever. We were having a great summer; the twins, Rylie and Gavin were both seven, getting ready to go into 2nd grade. Korban, our mischievous little ball of energy, was 18 months old.
One day Rylie accidentally swallowed a tooth. She opened her mouth wide to show me where it came from and I was struck by how crooked her teeth were. She mentioned that they were loose. As I looked at her, I noticed that her left eye didn’t look level with her right eye. I asked a few family members if they could see it.
Everyone thought it was probably allergies so I took her to an allergist. She failed the breathing test and seemed congested so they put her on an inhaler. Two weeks later her energy was really low, and she couldn’t stay awake the entire day. Her face looked more distorted. We took her to her pediatrician and they thought maybe she had an abscessed tooth.
I knew it was not an abscessed tooth.
A MOTHER’S FEAR
I packed all of the kids in the car and headed up to the Children’s Hospital two hours away, making calls along the way to any doctor she had ever seen. Her ENT let us into his office and right away, he felt a defect in her face. He sent her for a CT Scan.
That’s when we knew it was serious. Rylie was there for the rest of the week undergoing all kinds of tests. A couple of weeks later we were told that Rylie had a very destructive disfiguring tumor that mimics cancer called Aggressive Giant Cell Granuloma.
It is an extremely rare and aggressive bone tumor that was eating away her facial bone structure.
The news made my mind go numb. I felt like my heart and soul had fallen through the earth. I remember thinking back on everything she had ever done…everything I had ever done with her.. just trying to make sense of it. The prognosis wasn’t good…
How were we going to make her not scared to die?
This tumor needed to be resected as soon as possible before it continued to cause even more destruction. Since its discovery only weeks before it had already eaten away her sinus orbit, palate, and much of the left side of her face up to her eye orbit. It took her tumor team quite some time to come up with a surgical plan. Once they did, Rylie was scheduled for surgery to remove as much tumor as possible along with the margins of bone around where the tumor had caused destruction. They tried to prepare us for how our daughter would come out of that 7 hour surgery. They informed us that she would no longer have her teeth but after time would get implants, and that plastic surgery would be a big part of her future.
They also told us the recurrence rate was very high.
Everything was unknown.
WHEN MOM HAS A BETTER PLAN
Originally, based on the information from the MRI, our understanding was that Rylie had incurable cancer. Things were moving very quickly, a treatment plan was forming, and I could feel the sense of urgency from Oncology.
I immediately started contacting other Oncology parents and learned a ton in just a few days. During that time I was connected with a woman who went on to become a wonderful friend, Tracy Ryan. When I found out that Rylie’s tumor was benign but still very aggressive and serious I asked my new mom friends for advice and they all encouraged me to pursue cannabis. I’m so thankful for their advice. Rylie’s treatment still held so many risks and uncertainties…I had to do my best to give her the best outcome possible.
Research on cannabis can be like going down a rabbit hole. I started researching one thing and then realized quickly that there were more applications for cannabis therapy. We thought we were using cannabis oil to shrink her tumor and “accidentally” realized it was absolutely amazing for bone regeneration and her seizures. So then I started researching all of that.
It so happened, that through all of this research and learning, we discovered how wonderful cannabis could be for so many different conditions. I realized that a lot started happening “by chance” and I learned to really start trusting and following my gut.
It was the thought of losing my daughter without turning over every rock imaginable is what led me to cannabis.
AMAZING PLOT TWIST
I had been looking into cannabis therapy as a treatment to help shrink tumors and keep them from returning. I had learned that it may also help her inflammation and prevent nerve damage. Rylie was due for a post surgical MRI one month after surgery.
She started cannabis oil one month and a day after surgery. Immediately, upon beginning cannabis treatment, Rylie was able to discontinue using her Tylenol with Codeine for pain and her inflammation subsided.
That in and of itself was worth it.
Upon her second post surgical MRI I learned that the bone around her teeth was regenerating remarkably well and not only that, but that the tumor that couldn’t be reached during surgery was also shrinking.
Every single post-surgical MRI followed this path of healing…absolutely remarkable bone regeneration and tumor shrinkage. We also discovered that she had no nerve damage from this very invasive surgery. We soon realized that seizures she had started having after surgery were also manageable with cannabis. She continues on cannabis therapy for pain control, inflammation, tumor stability and most of all seizure control.
ILLEGALLY HEALED – RYLIE’S LAW
During this time, Cannabis was illegal for pediatrics in our state, so we did all this treatment without telling her doctors. We were referred at one time to a pain specialist because of the amount of pain she was in when we would try to wean her off of cannabis and put her on AEDs (antiepileptic drugs). The AEDs literally caused her jaw and face to hurt so badly that she would discontinue eating and there was one medication she was put on that made her teeth begin to loosen up again.
All of the progress her body had made was going in reverse due to a licensed pharmaceutical. The pain doctor told us she was a perfect candidate for medical marijuana but that it was not legal for pediatrics so he could not help us.
He felt so badly he would not charge us.
We finally decided we couldn’t hide this anymore and contacted our local senator – one whose stance on medical marijuana had been, up to this point, rather anti. But, I figured that if he could see what we see, then, indeed, the incredible healing properties of medical cannabis were “real” and therefore everyone else would understand. We showed him her medical records and invited him to our home to speak with Rylie. She spoke to him directly and told him about how she felt with and without cannabis. He has been our family’s champion ever since. And through him we now have cannabis for pediatrics in our state and the law is named Rylie’s Law.
WHAT I KNOW NOW ABOUT CANNABIS THERAPY AND RYLIE’S CONDITION
I have only been contacted by two other people (but know of 3) with the same exact type of tumor as my daughter. Two have had multiple recurrences and one is a newly diagnosed tumor. Rylie is the only one to use cannabis from what we know. This type of tumor has an extremely high recurrence rate and is extremely destructive.
Rylie is now stable almost four years.
HOW THIS KNOWLEDGE HAS IMPACTED MY KID (AND MY WHOLE STATE)
After seeing Rylie’s truly remarkable results I have fought for our state to have a pediatric medical cannabis law and for its pediatric medical cannabis patients to be allowed to have their cannabis oils on school property.
Both laws passed with unanimous votes.
I stay extremely active as a policy adviser, currently working toward adding autism as a qualifying condition to our pediatric laws and lifting our THC limits. I also continue to learn as much as I can about cannabis therapy. I do my best to educate, become involved in research, and continue my work as a cannabis consultant for CannaKids in the hopes of giving families better options they may not have had before.
RYLIE’S SMILE TODAY
Rylie’s tumor is stable and her next scan is in December. She is wise beyond her years. She understands a lot more about life and death than most kids her age do. She has wonderful grades in school and absolutely loves the arts. She takes classical piano and takes broadway courses at a local theater school.
She has her 501c3, Rylie’s Smile Foundation, that has been growing steadily. She has been able to touch many little lives with her foundation. She meets so many children who would benefit from cannabis oils but because of cost the families can not afford to try this option for their child. Sometimes resulting in suffering or even death. One of her biggest goals is to someday make oils that are of highest quality and affordable or even free to all families with sick children.