Ryder's Journey
​On January 29, 2010 at 4:51pm Ryder came into this world a beautiful baby boy. Two minutes later his best friend and twin brother Tyson followed. Born 6 weeks early, they were both sent straight to the NICU. Tyson came home after a few days but Ryder was battling bradycardia and had to stay at the NICU until February 13. While Ryder undoubtedly made many new friends at the NICU, Mommy and Daddy were happy to have him home. It made for the best Valentine’s Day ever.
Welcome to the World
Neur-o-fi-bro-ma-to-sis???
​Throughout Ryders first year we had noticed he was covered in café au lait marks. Upon visiting the doctors, they told us that it was simply birth marks and to have him checked back out when he turns one. That following year, at his return checkup, doctors saw that Ryder had café au lait spots as well as freckling under the armpit. At that point Ryder was officially diagnosed with Neurofibromatosis. We had never heard of this and were advised to not worry too much as kids Ryder’s age are rarely affected by this unpronounceable condition. At this point he just has marks.
Still some concerns
Ryder had been a happy toddler jollying along but he didn’t seem to be physically developing as fast as his brother. He didn’t walk like Tyson. He wasn’t jumping or running as much. He just seemed a bit slower physically. The doctor advised us to have a full body MRI after his 2nd birthday. They found nothing wrong with him.
The week that changed our world
Saturday March 9, 2013 - Our daughter, Sydney, told us that “It looks like Ryder has a lazy eye.” We watched him for the weekend and it seemed that there was a bigger issue. We would cover up his “good” eye and hold things in front of him to see if he could touch them. He would reach for it but reach to the wrong place. Something was not right.
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Monday March 11 - We made Ryder a doctor appointment to find out what was going on.
Tuesday March 12 - We took Ryder to his doctor and she told us he that his eye was definitely not right and that we need to perform an MRI as soon as possible.
Wednesday March 13 – Ryder went to see an ophthalmologist to further examine his eyes and he told us the same thing. There was a mass in his eyes and we need an MRI to find out what it is.
Friday March 15 – Ryder went in for his MRI. As they were wheeling him out into recovery, we got a phone call from the ophthalmologist telling us he was looking at the images from Ryder’s MRI and “Ryder has cancer.” …. Ryder has cancer…. Our 3-year-old son has cancer. They found tumors strangling his optical nerves slowly taking his sight as well as a dozen other tumors throughout his brain. They could not operate to remove them as removing them would take the last portion of his vision. They decided that to try and preserve this tiny bit of vision we should choose chemotherapy.
Monday March 18 – We met with Ryder’s oncologist to discuss his chemo plan and the next steps. Ryder was to begin 15 months of chemotherapy.
Tuesday March 19 – Ryder went to surgery to have a portacath placed in his chest to begin chemotherapy treatments. After a minor setback with pneumonia, Ryder took his first round of chemo.
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In less than 10 days our world went from playing with a normal healthy 3-year-old and wondering about what he might want to be when he grows up to fighting cancerous brain tumors and not knowing what tomorrow has in store.
The routine of cancer
Ryder endured 15 months of chemo treatments. Going in weekly to spend the day in a chair with needles and lines attached to his chest. Give a blood sample. Wait for results. Have a giant needle poked in his chest. Sitting for hours upon hours while tubes stuck out of his body dumping drugs into his system. Every 8 to 10 weeks he was sedated and given an MRI. After each MRI he was to follow up with the oncologist. Then with the ophthalmologist. He would see a neurologist. He would follow up with Genetics. And throw in a psychiatrist because isn’t it normal to see this many doctors regularly?
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After a while it became routine for Ryder. He knew exactly what to expect. And for the most part, he bravely walked into each appointment knowing full well he was going to get poked and prodded. The doctors, nurses and support staff at each appointment did an amazing job making it as comfortable as possible for Ryder but what is enjoyable about any of this. Yet, through all that, Ryder somehow maintained an incredible attitude and managed to find a reason to smile at each step. People would ask us if we ever question why it has to happen to a kid like Ryder and our response is “because Ryder can handle it.”
Can I start school?
While many kids were starting preschool at age 4, Ryder was still receiving chemo treatments. Due to this, the doctors advised him to not begin school due to his weakened immune system. Our little 4-year-old should be on the playground running around, making friends, learning to play kickball and enjoying a normal 4-year-old life. Ryder, however, was in a blue chair in the pediatric oncology ward with drugs pumping into his body. He was not able to develop like a normal 4-year-old and missed out on so much.
First sign of hope
The tumors on Ryder’s optical nerves (Optic Gliomas) had taken 100% of the vision from his left eye. The battle was to keep the 10% remaining in his right eye. This 10% proved to be critical. The 15 months of chemo had done just that. Preserved the tiny 10% vision left in his one eye. We had a victory!
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After his chemo was complete, his ophthalmologist had recommended he begin school at the Blind Children’s Learning Center in Tustin. We checked it out and found an amazing team of people dedicated to giving blind children the support and education needed to thrive in the world. It was here where we found that living blind doesn’t have to be a helpless endeavor. The teachers at Blind Children’s Learning Center gave Ryder the amazing foundation that he has today. He learned not to let disabilities make you disabled. He learned that there’s always a way. He learned that if you want to do it, you can.
Changing the unchangeable
Because Ryder is blind does not mean that he cannot do things. It simply means he needs to find a way to do it. And he does. Ryder plays soccer through a VIP group of AYSO. He has someone on the field to help him out and he uses a ball with a bell in it. Ryder plays baseball with his brother. He can hit off a tee pretty accurately and catch a ball if you count down when to grab it. Ryder paints the most beautiful paintings based on what HIS vision of something is. He loves to play music on anything and has an ear that can pick out different instruments. He excels at school. His math skills are off the charts. He reads and writes braille. He walks independently using a cane. He is a very curious kid asking questions about anything and everything and soaking up all kinds of random information. Ryder wants to participate in everything that his friends and family do. He just won’t sit back and say I can’t do this because I’m blind. He just gets up and finds a way.
Today
Currently, Ryder still has tumors on his optical nerves and his brain. They will never go away. They will never be in remission. The chemo stopped them from growing and they are stable. He continues MRI’s regularly to make sure these tumors aren’t growing again as well as numerous doctor visits.
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But all of these things don’t matter to him. He’s enjoying being a kid. He’s never been one to let his situations ruin his good time. He’s taught us all that the world is filled with so many wonderful things and it’s not what you see but how you see it. He sees the world through his heart instead of his eyes. Ryder is an inspiration to so many.
"The only thing worse than being blind is having sight but no vision”
- Helen Keller