The condition, in which brain tissue extends into the spinal canal, will require a surgical procedure
Three weeks ago, Angela Doescher got a phone call that ranks as one of the most frightening she has ever received.
That is saying a lot since she has received more than her share that have updated, changed or added to her son Stryder’s battle with a variety of illnesses that no 6-year old boy should have to deal with.
The latest diagnosis, Arnold-Chiari Malformation Type 1, is, if it’s possible, the worst news yet.
The Mayo Clinic defines the malformation as “a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
“What can I say when I know that the typical first-symptom of this disease is death?” she asked, fighting back tears.
But, add it to the list she must — a list that includes Retroflexed Odontoid, Clivo Axial Angle, Basilar Invagination, Uneven Tonsils, Diffuse Cervical Bulge, Levoscoliosis, and Pansinusitis.
Don’t forget Epilepsy, Landau-Kleffner Syndrome- PFO (hole in the heart), and an aortic root dilation (aneurysm).
Angela has become an expert in many things she would rather not.
“It’s been almost two weeks (posted on June 6) since we got the call that scared the daylights out of me, but also was a lifesaver,” she writes on her blog. “Since then, I have learned a lot and I’m going to attempt to explain it all here. Please understand I am not a doctor and this is to the best of my knowledge and what has been told to me by doctors, friends and others who are great at reading MRIs.”
With Stryder’s latest condition, the medical costs continue to mount, and the community continues to respond.
On Monday night, the community renewed its support and fundraising efforts with a “Family Zumba Fitness Night” at the Cecil Sly Gym.
Led by fitness instructor Amanda Shaffer, the event offered participants “a night of shimming, shaking and dancing.”
“Last year we did a fundraiser for Stryder to get him Keebler (Stryder’s alert dog),” said Shaffer. “When I heard about the recent round of testing I wanted to do something again. This is the least I can do to give back to the community and this school.”
Shaffer was joined by fellow Zumba instructors Sandy Baker, Deanna McHaffie and Ramona Freeman.
McHaffie had led last year’s fundraiser and brought her regular Powell Butte class participants with her to this event.
“It’s a great time to get together to do something for a worthy cause,” added Shaffer. “My Zumba addicts will be here for sure.”
Angela was not even aware of the fundraising effort until the day it was scheduled to happen.
“I never asked that anyone do any of this,” she said. “It means so much to me that they are doing it. I don’t have to worry about the fundraisers — I can worry about arrangements for Stryder.”
Angela learned something else on Monday — that Stryder had been accepted as a surgical candidate at the The Chiari Institute in Great Neck, NY.
“The good news is that Stryder has been accepted,” she said. “The bad news is that his condition is serious enough to have been accepted.”
According to Angela, the institute doesn’t accept everyone and she was required to send Stryder’s MRI and fill out a 12-page questionnaire to be reviewed by the institute’s panel of doctors.
Angela is schedule for a Skype conference with the doctors this week to determine Stryder’s schedule for surgery.
“When we go there, we will be going for surgery,” explained Angela. “We are fortunate to be able to get this pre-conference completed without having to travel to New York.”
This particular procedure is to address Stryder’s brain stem and spinal column malformations. Stryder has what Angela refered to as a “kink in the brain,” resulting in his brain stem being almost perpendicular to his spinal column. Rods will be placed into his brain to straighten and stabilize the condition.
“Stryder’s neck will have less than 50 percent movement afterwards,” explained Angela, “He will also have shunts put in to drain fluids from his brain.”
The procedure is only the beginning of another in a string of challenges for Stryder.
He is facing at least one month of recovery time in the New York hospital and subsequent procedures to adjust the rods as he grows.
Without knowing Stryder’s story, and watching him play, observers might be hard-pressed to accept the severity of his condition.
“I know that things hurt,” said Angela. “He gets headaches and has severe back pain.”
That’s where Keebler steps in.
“Keebler has been on top of Stryder way more than before, even at school,” said Stryder. “They bonked heads today and Stryder was crying, so Keebler barked. I wouldn’t have known otherwise. Keebler has done more than I ever thought he could.”
Facing more surgeries, the Doescher family continues to deal with ever rising medical bills.
“The institute never asked if we could afford this,” said Angela. “They understand that most people do fundraisers.”
Even though the family’s insurance covers 80 percent of the bill, they are still left with a sizeable 20 percent payment. For the upcoming procedure in New York, their share of the $70,000 cost is $14,000.
“What’s the alternative?” Angela asked. “If we don’t do this, he doesn’t make it. If I have to pay $100 a month for the rest of my life, I will do it.”
Angela has become unashamedly direct about the family’s need for help.
“I know everyone has given so much already, but this is the next chapter in Stryder’s story and we need everyone’s help,” she said.
On the wall of the Cecil Sly gym, where the Zumba fundraiser took place, the school’s slogan ends with the statement: “I can, I will, I must.”
One couldn’t be faulted for thinking Angela, with Stryder’s help, had written those words.
On Saturday, June 14, there will be a benefit car wash and lemonade stand at the Bank of the Cascades, located at 103 N.W. 3rd Street, from 10 a.m. until 2 p.m.
Saturday, June 28: “Golf for Stryder:” Four-person golf scramble at Meadow Lakes Golf Course. Entry includes a round of golf, a cart, and dinner afterwards. Entry is $75 per person or $300 for a team of four. Deadline for entry is Thursday, June 26. For more information, or to register for the event, call 541-447-7113 or email email@example.com.
Saturday, June 28 “Dinner with Stryder:” Dinner, a 50/50 raffle and a silent auction. Dinner begins at 5 p.m. at Meadow Lakes Golf Club, with the auction to follow at 6:30 p.m. A dinner of Flat Iron Steak with scalloped potatoes, green beans, rolls and a cookie is available for $20 (if not paid for as a part of the golf tournament).
Stryder’s Mom, Angela, is also selling t-shirts. For more information, go to angeladtees.com/shop/category/Stryder?c=990517&ctype=0.
Angela also maintains a blog at strydersstory.com/ and you may follow her, and Stryder, on Facebook at www.facebook.com/StrydersStory