Rylie’s path in life changed the summer of 2013 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 severe dizzy and nausea spells. Her eyes seemed puffy and slightly uneven. She was dx’d with wheezing and reflux. We thought we’d found what was bothering her!
Second grade began a few days later and her exhaustion worsened. She would fall asleep on the way to school and then 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 any of this. Within the first weeks of school she came down with a high fever. 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 different non alarming reasons why her face was looking uneven. In the days after her virus, every morning she would wake and the asymmetry of her face was changing even more drastically. We called her pediatrician and they said to come in Saturday morning 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 while calling every specialist we’d ever seen there and begged them to see her explaining what was happening to her. The second doctor’s staff said to come straight to them. It was her ENT that had 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.
After her CT the tech asked us to wait because her doctor may be able to talk to us about the results. They began paging him and sent us back to his office. We got back 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, maxilla, 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 which was diagnosed by radiology as Rhabdomyosarcoma and we were sent to Oncology for a consult. The tumor was presenting so aggressive and invasive that they were certain 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! After about an hour her doctor who was in the operating room with Oncology and the rest of the teams 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 40 times to ensure what it was. It was the most excruciating 2 weeks of our lives! The final results were Aggressive Giant Cell Bone Tumor that they had never encountered before in their hospital. It mimics a malignant destructive bone tumor and has a high recurrence rate but it was not malignant! Her reconstructive surgery was scheduled for November 13, 2013. The tumor had invaded her palate, nasal orbit, sinus, eye orbits, cheek, maxilla, mandible, and teeth roots. Her surgery took over 6 hours. They did not expect to save her teeth but did by stitching them into her skin in hopes that when the bone regenerated the teeth would take hold in the new bone. She was put on a liquid diet to help protect them from being damaged. A small bit of tumor was unfortunately left behind and Rylie suffered a mini stroke as a result of the surgery. She began having seizures two weeks after her surgery, although we did not recognize them as seizures at the time. As they continued and got worse we realized what they were and she was diagnosed with a seizure disorder resulting from her tumor removal.
We did a ton of research on how to help Rylie heal from her surgery, regenerate bone that was lost, regenerate her teeth roots, repair nerve damage, and help not only shrink the tumor left behind but keep it from returning. My research always led me back to Cannabis Oil. Rylie began Cannabis Oil therapy shortly after her first post surgery MRI in December of 2013. We immediately noticed her inflammation and pain subsided. She had been through a ton of stress for a young child and we also noticed she slept better on the Cannabis Oil also. With the following scan we had remarkable results! The tumor that was left had shrunk by ¼ it’s size and her bones were showing signs of regenerating especially above her lip and around her teeth where we needed it the most. Her doctors were astonished yet they did not know she was on Cannabis Oil. Her next scan after that the same thing but even better! The tumor was still shrinking and bone was regenerating at wonderful speed and strength! Her doctors were loving the way she was healing!! Every scan has followed this pattern as far as her bone tumor and the healing process of her reconstructive surgery. We have even had 2nd and 3rd opinions who were amazed at how her bones have regenerated! Her last scan in December actually showed where a tooth root was regenerating where the tumor had dissolved the previous root. To me…that was the neatest thing to see!
December 2014 we thought things were good as far as her bone tumors and that we could wean off of Cannabis Oil and Rylie’s seizures quickly became intense. That is when we realized that we needed more help and that we were in this for more then a year or two…this may be a life long deal for her. Her scan in June 2014 showed 1 lesion and her scan in December 2014 showed 3 more lesions. We tried numerous pharmaceuticals and the pain in Rylie’s bones where the bone tumors were became unbearable. Her pain level was so great she wouldn’t talk or eat. Her jaw joints began to deteriorate and some of her teeth began to loosen once again. Her grades and activity started dropping. I would not let my daughter’s hard work and progress to beat that tumor be undone by pharmaceuticals that did not even completely give her a seizure free life!! We contacted Tracy Ryan and quickly got Rylie back on Cannabis Oil for her Seizures. She now has a beautifully high seizure threshold, no inflammation in her jaw, a lot less pain, her teeth are no longer loose, and on top of it all it is helping to prevent that darn tumor from returning!! It has given her quality of life back to her!!
We had one more hurdle though in order to give our daughter the life she deserves…we had to change the laws in Delaware. In Delaware, Medical Marijuana is legal….for over 18 years of age for debilitating medical conditions, with a prescription and a medical card. I am a researcher by nature and have loads of research from the last couple of years on Cannabis Oil for medical uses. I first took my daughter to a Canna Center to talk to them. They went thru the entire process with me and met with us for 4 hours. They looked for every loop hole in our law and couldn’t find one. They felt horrible because Rylie met all of the qualifications yet was under 18. I then chose the one Republican Senator who had campaigned against medical marijuana when he was elected and called him. I asked him to give me 10 minutes. He did. I figured if I can convince him then I can convince the entire Senate and House of Representatives. He looked thru Rylie’s medical charts, talked to her, I showed him her oil, gave him tons of research. I said, “You can turn us in or help us at this point because I’ve told you everything.” He had tears in his eyes and said “We will get this done for Rylie.” Soon after that day he called me with good news, he had drafted a new law and named it “Rylie’s Law.” He was very open to advice from Tracy Ryan, our local pediatricians and I on the law and revised it where it needed it. I have been told by the Cannabis Bureau of Delaware, NormL and Marijuana Coalition representatives that it is one of the most well written laws they have seen. Rylie and I went to the Senate Health Committee and spoke there. It was very emotional for me but Rylie was so calm and perfect! It passed and went to the Senate for a full vote! At the Senate we got to be right there on the Senate Floor and it got a unanimous vote of “yes”! Next we went to the House Health Committee where Rylie and her twin brother were allowed to run the Committee meeting! It passed unanimously and went to the Full House Floor for a Full Vote in the House. Again Rylie and her Brother were called up to run the Chamber Meeting!! This was a positive sign and I was excited!! Rylie’s Law passed thru the House unanimously also!! It is unprecedented for a law such as this to pass all the way thru legislature with unanimous votes!! It will go down in history! I am so proud of my daughter because she fully understands what this means for her and other kids. She is not afraid to get up in front of 200 people and speak from her heart about what a difference Cannabis Oil has made for her. Once passed “Rylie’s Law” will allow Medical Cannabis Oil for minors with a pediatrician’s prescription.
During all of this Rylie started her own Non Profit Foundation call Rylie’s Smile Foundation. Rylie started her foundation to help other children who are battling for their lives with a rare disease. She considers herself extremely fortunate and wants nothing more then to help other children still suffering more then her. Her foundation gives iPod Touches to children who are in the hospital for large amounts of time for treatments so that they can “escape”. The foundation also raises awareness and funds for Pediatric Cancer research. She is only 9 years old so she doesn’t quite understand the magnitude of how much she has already helped children who are battling health issues. There is a saying about Rylie in our small community “There is no stopping that girl!” A huge thanks to the CannaKids team for consulting us in how to dose, ensuring the best protocol for Rylie’s specific needs.
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