How One Mom Used Medical Cannabis To Save Her Daughter’s Life (And Change State Laws).
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?
Rylie before surgery
THE PLAN
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.
Rylie one day before surgery.
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.
The signing of Rylie’s Law in the Delaware State Senate
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.
Rylie’s Law to become law
With the Thursday, June 11, passage of Rylie’s Law through the House, children suffering from various forms of seizures will soon have access to medicine that was previously reserved only for adults..
The House voted unanimously in favor of the bill with 40 yes and one absent.
Rylie’s Law, Senate Bill 90, is named after Rylie Maedler, a 9-year-old from Rehoboth Beach. It would allow Delaware children under the age of 18 to use medical marijuana-based oils to treat intractable epilepsy and dystonia.
Immediately following the vote, Speaker of the House Rep. Pete Schwartzkopf, D-Rehoboth Beach, thanked his fellow House members.
“This is very important to this little girl right here,” he said with Rylie standing proudly by his side.
The bill was introduced May 7 by Sen. Ernie Lopez, R-Lewes, and it sailed through the Senate by a unanimous 21-0 vote June 2.
Medical marijuana was legalized for adults in Delaware in 2011, during the 146th General Assembly. The state’s first dispensary, First State Compassion Center in Wilmington, is a expected to open Friday, June 26.
Delaware joins 12 other state where cannabidiol oil is permitted for medicinal purposes.
The legislation now moves onto the desk of Gov. Jack Markell for his signature.
Prior to the vote, Kelly Bachman, a spokeswoman for the governor, said there was no timetable for signing the bill if it passed through the House.
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 at the passing of sb181 in the Senate
Rylie started her foundation, Rylie’s Smile Foundation, to help other children who are battling for their lives with a rare disease or disorder.
She considers herself extremely fortunate and wants nothing more then to help other children still suffering more then her. Rylie’s journey started in 2103 with her teeth shifting. Her dentist had said she would need braces so we were not alarmed. We then noticed she was more tired then normal. She would also have dizzy spells and periods of nausea. Her eyes seemed puffy and slightly uneven. We took her to her allergist. She was dx’d with wheezing and reflux. We thought we’d found what was bothering her!
Second grade began a few days later. We noticed her exhaustion was even more pronounced. She would fall asleep on the way to school and afterwards. She started chewing her food on the right side of her mouth. We later found out her teeth on her left side were becoming loose and they felt strange to her. She didn’t tell us all of this. Within the first weeks of school she came down with a high fever and stayed home for a week. Her father and I both thought, “Ahh, this is what is going on! She had a virus in her system.”
During this time her eyes continued to look slightly uneven and her nose looked off center. It was so gradual that we would ask family and friends if they saw it. Many people would guess: blocked tear duct, allergies, sinus infection, etc. In the days after her virus, every morning she would wake and the asymmetry of her face would be a little more off until Friday when she woke it was extremely puffed out. We called her pediatrician and they said to come in Saturday morning. We took her in the next morning expecting to have an MRI done immediately but they examined her and were not sure what to make of it either. They suggested seeing an eye doctor or dentist. My mom-gut was panicking.
Monday morning I got the kids in the car early in the morning and started the two hour drive to AI DuPont Hospital for Children. I then called every specialist we’d ever seen there and begged them to see her explaining what was happening and what she looked like. The second doctor’s staff said to come straight to them. It was her ENT, Dr. Schmidt, that had only seen her once before years earlier. He took us straight in and as soon as he felt her face he felt defects in her cheek and nasal orbit area. He sent us for a CT Scan and said he’d let us know the results.
We went to have her CT done. Dr. Schmidt had already left for the day. After her CT the tech asked us to wait because Dr. Schmidt may be able to talk to us about the results. They began paging him and sent us back to his office. We got back upstairs to his office and overheard that he had left but was coming back in for us. He came in and brought the CT up on his computer. It looked like a skull that had a hole blown thru the face! Her nasal orbit, cheek , sinus, eye orbits were all diseased with this tumor eating them away! We were going to have to come back for an MRI under sedation. He reassured me that they had a renowned plastic surgeon on staff that he would be consulting with and we would meet.
After a few days (because of insurance) we had her MRI. It showed a solid mass and we were sent to Oncology for a consult. The tumor was presenting as severely aggressive and invasive! They were very certain that we were dealing with a high risk malignant tumor. She went thru several blood studies, full body CT, and we signed waivers to install a port at the same time they did the biopsy on the tumor, her bone marrow and spinal fluid. It was scheduled for Friday, October 10th, 2013. The wait outside of the operating room for our family was excruciating! Dr. Schmidt was in the operating room and came out to talk to us. He had a slight grin.
He said “The rollercoaster continues. Pathology is not convinced that it is malignant so we have halted the port procedure. We may be back here when the report comes back but they feel confident enough right now to stop the procedure today.”
Hallelujah!! We waited for two weeks while they tested her biopsy approximately forty times to ensure what it was. It was the most excruciating two weeks of my life! To get the call from Oncology that they were half way thru the testing and so far it was not coming back malignant is what carried us through. The final results were Aggressive Giant Cell Granuloma her reconstructive surgery was scheduled for November 13, 2013 with Dr. Napoli and Dr. Schmidt. The tumor had invaded her palate, nasal orbit, sinus, eye orbit, cheek, mandible, and teeth roots. Her surgery took a little over 6 hours. They did not expect to save her teeth but did! Thru a lot of work gently healing, liquid & soft diet, regular scans she has healed remarkably!
As of today she has Focal Seizures, severe jaw joint pain on the effected side, some nerve pain and TMJ but her bone tumors are STABLE! Considering what we could have been facing we consider ourselves, and she does too, the most fortunate family in the world!
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.
Rylie speaking at a fundraiser with one of the foundation recipients behind her (severe autism & brain wasting syndrome)
For more information about the Rylie’s Foundation, click on the link below…and remember, when you help a kid…you help their Mom too… Go ahead a give a little.
Preview 9-Year-Old Girl’s Illness Inspires Her to Start a Foundation
