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Good morning warrior families!  My son, Ryder was diagnosed last year, 6/16/2022 the day after his (and his twin brothers) 4th birthday! Yes, he’s a twin and his twin (so far) is healthy. I actually had the extreme pleasure of meeting up with Katie Bernard this past month here in our hometown of Huntington Beach, California. I told her, I owe all of you our story. I’m sure many of you can understand, once you write it, it’s true! Confirming all of what we already know but hate to admit, our children are ill.


Ryder started showing “migraine type” symptoms 10/2021 and after two trips to the ER and many doctor appointments, he finally was given a CT scan that showed the enlarged ventricles after Christmas 12/27/2022, we stayed that night in PICU awaiting VP shunt surgery. That next morning after the surgery, our neuro surgeon assured us that the enlarged ventricles and hydrocephalus was his only diagnosis and his brain was clear of any other possible obstruction.


Ryder was a full term twin, no NICU time as an infant and had no other concerns. He only saw the pediatrician at well baby visits, and was a happy, bubbly chunky toddler. While healing from the shunt surgery, many doctors on their rotations and nurses came in and made the statement “wow, it’s so odd that an otherwise healthy child would present hydrocephalus at 3 years old”. We repeated this statement to our Neuro surgeon and he dismissed us, stating “that’s why he’s Neuro Surgery and the others are just rotating doctors or nurses”.


We went home to recover, our Neuro surgeon gave Ryder about three weeks to be back to 100%. Follow up appointment came and my husband mentioned Ryder was doing great, however he was hovering over 85-90% not the 100% he assured us. At that time he suggested an MRI and told us it was specifically for baseline (mind you my husband picked up on cues that he was also questioning something to look for with our feedback of him not being back to 100%). The MRI was not flagged as urgent so we scheduled it for 4 months out, the first available. I called to let the office know and they, again stated it was fine. No concern was flagged. Strictly baseline.


Two weeks before the scheduled MRI, on a Friday, I picked the boys up from preschool and their teacher mentioned that Ryder seemed wobbly after quickly falling asleep during an end of the year movie. His school hours are 9-12 and he had just slept 12 hours that prior night. Everything about this felt so odd, that I quickly called my sister who lives walking distance away and asked her to come over and check him out. The trauma of the shunt surgery had me questioning everything at this point. My sister showed up and he started what would end up being a MASSIVE focal seizure. We (husband and I) rushed him to the ER where he was intubated and room was coded for airway/respiratory distress. He was hypothermic and we were scared.


After a slew of tests and three and 1/2 weeks in PICU, another MRI was requested adding the SPINE to the test. That is where his tumor was found. Ryder was sent home waiting pathology. Neuro assumed it was DLGNT and actually had some exposure and experience with this type of tumor. Pathology came back and confirmed this diagnosis. We’ve since gotten a second and third and a verbal forth opinion through a network of caring individuals that have helped get his scans to the right people. his initial protocol was traditional chemo (carbo and vincristine combo), he only truly made it to about 5 infusions due to low counts, being sick and additional surgeries (port/ pic line etc).


September 2022 his scan came back and showed progression so we’ve switched him to Trametinib and also placed him on a cannabis panel that incorporates all three, CBD, CBG and THC oils and he’s been stable and thriving. Riding his bike, climbing with his brother, asking to go to school… all good signs of feeling well. currently he’s also on two anti - seizure meds so he has a slew of syringes during the day but tolerates them fine. The cannabis has definitely helped with his day to day, appetite and all around energy. He’s still had some super small focal seizures through all the meds but since the cannabis, they seem super small and quick (like a few seconds long).


We pray for all your kiddos and wish families didn’t have to endure such heartache. There is nothing as devastating as watching your child suffer with minimal help to provide. We’ve piloted with Katie’s project team and pray they can work towards a treatment or cure that helps us all. 

💛🙏🏻🌈 love from all of us at Ryder’s Fight Club!

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