Rally for RyRy

Caring Bridge Link to Ryan Updates 

First of all, thank you for caring about Ryan and her wonderful family. Second, thank you for participating in this Go Fund Me effort which will help Ryan's family through this difficult and challenging time. Ryan has a big brother, AJ, who is worried about his sister above all else. The words below come from Ryan's mom and give a synopsis of what they have all been through so far.

Everyone that has met Ryan knows that alongside this adorable and silly Princess is a strong willed, confident, and determined little spitfire. However, this spunky, donut loving, firecracker is in the fight of her life right now. This past Friday (yes Friday the 13th in 2020 was a bad choice) we took Ryan to a routine eye exam because we noticed her starting to squint and favor her stronger eye and believed she likely needed glasses to correct a developing lazy eye. At the exam, the Doctor noticed something alarming and firmly advocated we go directly to the Nationwide Children's Hospital ER and request an MRI to, if anything else, rule out that anything neurological as the root cause of these eye concerns.

Unfortunately that wasn’t the case as the MRI images clearly and alarming changed our lives forever as they revealed and displayed a large baseball sized mass on her brain. We were instantly admitted into the ICU at the dismay of Ryan who just wanted to go home and eat pizza with AJ.

The next day (Saturday Nov 14) we had a fully-sedated head and spine MRI and luckily confirmed that this was the only location of the tumor, It was very clearly delineated and Ideally accessible along the back left side behind her ear along her temporal (behavior, emotions) and putting a lot of pressure on her occipital (vision) centers of her brain. (This quickly made a lot of sense)

The doctors and surgeons felt confident that the location and being clearly demarcated gave them a good shot at removal, but that the size and complexity with a lot of nerve endings and being a very vascular tumor was going to give them a challenge.

After a long and frustrating steroid rage Sunday (Nov 15), and an even longer, confusing and angry night, we prepped for surgery early Monday Morning (nov 16).

Led by Doctor Leonard (look him up) the brilliant and skilled neurosurgeons fully extracted the tumor successfully in a roughly 6 hour surgery. The follow up MRI confirmed these results Along with a perfectly preserved healthy brain.

Ryan made it back to her room that evening still fully intubated with breathing tube and ventilator, swollen face, head wrap with tubes and IV’s coming out of everywhere. But she’s perfect... she’s here, put back together, recovering, highly medicated and in true Ryan fashion...still fighting.

As we start to wake up this Tuesday morning (Nov 17) the plan is to remove her breathing tube and let her start waking up to begin another long day filled with small steps on this marathon ahead.

We still remain cautious and concerned about the diagnosis of the cancer and what the treatment plan to control and stop this terrible disease from returning. We hope to learn more in the coming days about all of that as we keep making steps towards recovery and getting our baby girl back.

If there is one thing we know and have learned is that Ryan is Intensely loved, we are loved, our village is strong and reliable, and we are blessed with all of this immense and meaningful support that we continue to receive. We are going to get through this with your help and god’s love and your prayers. Please continue to stand by us, pray, keep sharing your positive thoughts, photos, emails, messages. We thank you from the bottoms of our hearts and need you all more than ever.

We can do this.

Update…. we have received some good news. A ton of good news. And amidst all of the frustration and fear and annoyance we may convey at the end of the day we count our blessings and write down the good news and focus on that. A couple recent things to focus on:

*Nationwide Children's neurosurgery and neuro oncology is among the best in the country and partly due to Ryan's oncologist Dr. Maryam Fouladi, they are able to consolidate all of her procedures (Suture removal, Spinal Tap, port placement, ovary harvest) into a single sedation reducing multiple visits and multiple anesthesia! Ryan is happy and healthy and loved by so many and on prayer lists all across the country! 

Moving forward, this whole process is scheduled to begin this Thursday (December 17th) followed by her first chemo treatment on Friday. Being the first treatment, we will likely plan for 4-6 days in the hospital to closely monitor her response to the medicine. It's hard to predict exactly how she will be affected and what symptoms we should plan for, but we know from experience that Ryan is as tough as they get and will have the best care possible to help make her as comfortable as possible. Ideally things will be stable enough that everyone is confident and comfortable to go home early to mid next week in time to celebrate Christmas at home as a family.

Please keep her and all of us in your prayers this week and especially on Thursday as we get started on this new path. We truly value your love and prayers through all of this. We are trying to stay strong...please stay strong with us and keep rallying for RyRy!