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!