Ryan’s Story

Site created on November 16, 2020



For everyone that has met Ryan, knows that along side this adorable and silly Princess is a strong willed, confident, and determined little spitfire. However, this spunky, donut loving, fire cracker 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 controls 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. 

Newest Update

Journal entry by Adam Ravestein

A lot has been going on with this proton process and wanted to share an update this journey has recently put us on. We were cruising through proton therapy and made it through the first eight treatments developing a really good sustainable routine driving down to Cincinnati and back. We were going into a long memorial day weekend excited about the pool opening up and having an extra day at home without an appointment. However, when Tuesday morning came around, we learned that the machine was down but were expecting it to be back up the following day. We were bummed about the loss of a day but felt confident we could make it up without pushing into much of July or into our summer vacation that we have had scheduled. It’s a pretty tight window to get all of these treatments completed but we’ve been optimistic with how efficient it’s been going . Then we learned the machine was down on Wednesday and then again on Thursday and then again on Friday! Each day they told us it would be back up tomorrow and each day it wasn’t. At this point, we have lost a week and started to get really frustrated and concerned with such a delay in a treatment plan. When we called that Saturday, demanding we get a plan in place we learned the goal was to take the show on the road and find a sister city with the exact same machine capable of running Ryan’s plan. Luckily, that city was Baltimore, Maryland, which happens to be one of only four cities in the US with this exact same proton machine! The only piece of information they gave us was to be at the Lunken Airport in Cincinnati by 7 AM on Sunday morning for a private charter with other doctors and patients from the Cincinnati center. Their hope was that this would be a three day effort in Baltimore and allow the additional days to get the machine up and running. With only one day to plan, we were unsure of all the logistics to make this work for us, AJ, our jobs and Boh. After talking with them, they approved the ability for all four of us to come and we made the homecoming trip as a family. They really did a good job thinking through everything we needed and made it really efficient for us to commute back-and-forth between the proton center and the hotel but what we are most thankful for is our Baltimore family who have made this trip extra special. We didn’t get back home on Wednesday like they had hoped but we did learn on Wednesday that the machine was back up and running and that they started to begin treatment back in Cincinnati that evening. So now the plan is for us to finish off the week here and travel back Saturday morning. It was an unplanned week to try and navigate, but we have made the most of it and really valued the flexibility of our employers, and our friends, to accommodate this shake up in our schedule. I guess if there’s one thing we learned is that in this process is and has never been linear and just when you think you’ve got something figured out, there always seems to be a curveball. However, the other thing we’ve learned about Ryan as well as our family and friends, is that when life throws us curveballs we knock that sucker out of the park and smile as we round the bases.  With that analogy, maybe we should try and take in an O’s game tonight! 
We couldn’t be more thankful for our baltimore crew taking care of us this week. We totally felt the love and cherish your support especially the Long fam who literally took us into their home for most of the week and made sure we had everything we needed. You guys are truly family and we can’t thank you enough. 
     This week has been a logistic marathon with new information and changes to the schedule literally happening every hour. Tomorrow alone we will Uber to the airport at 6am, fly into Cincinnati, take another shuttle to Lunken airport where the original charter left, drive to Columbus and turn around Sunday morning back to cincy for a 930 appointment. It’s been a grind but we keep pushing through. 
Please keep praying for a smooth process ahead and that Ryan is able to navigate side effects as we get into this second half of treatment coming up…13 down - 17 to go! Anxious to be home soon! 
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