Support Payton's Recovery

$5,225 of $5,000 goal

Raised by 95 people in 2 months
Elisabeth Celso
on behalf of Dawnn Walters
 ROCHESTER, NY
On January 22, 2017, 16-year-old Payton Walters took a bad blow from an elbow to his chin while engaging in one of his passions: playing hockey.  He was knocked off his feet, struck his head against the ice, and shortly after, couldn't remember what had happened, and suffered a seizure.


Payton was rushed to Galisano Children's Hospital via ambulance, where a CT scan revealed something lurking under the surface that was even worse than the concussion he had suffered.  In fact, the hockey injury may have saved Payton's life by revealing a congenital left frontal arteriovaneous malformation, or AVM, in his brain.  The Mayo Clinic describes and AVM this way: "A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain.  The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process."

With this condition comes the risk of stroke, brain damage, and even death.  Surgery to partially fix the AVM would involve embolizing some of the veins in the tangle,  but after four days in the Pediatric Intensive Care Unit, multiple MRIs, and a cerberal angiogram, the neurosurgery staff was unable to safely identify which veins to target.  Blocking the wrong vessels could lead to Payton being paralyzed in his right leg and hand, and to language processing defecits.

Full of fear of what his mother Dawnn describes as a "ticking time bomb in his brain," Payton's parents had no choice but to bring him home under multiple precautions, and began looking into their options.  Boston Children's Hospital has a proven tract record with AVMs, and the doctors there reviewed Payton's records, and agreed to see Payton next Wednesday, February 8, in Boston for an initial consult, and a functional MRI.  He will eventually require surgical intervention, in Boston, to repair and remove the AVM and eliminate the risk of a catastrphic hemorrhagic stroke. 


As you can imagine, there is a lot of cost involved in the testing and medical treatment that Payton will get, and has already received, and the added cost of travel and accomodations to and from Boston, and of his parents missing work.  On top of worrying about their son's serious medical condition, and continuing to care for and reassure his two siblings, there is a financial strain. 

At 16, Payton should be focusing on his love of hockey, video games, and being a Junior Firefighter in the Kendall Fire Department. Instead he is unexpectedly, and bravely facing a medical crisis.  Please help, and give what you can so that this family can focus on Payton's recovery and not on bills/money.  Whatever you can give would help.  Any little bit makes a difference. 

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Update 7
Posted by Dawnn Walters
1 month ago
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How do you tell a kid that no matter what they do, he's played his last hockey game when almost his whole identity is wrapped around hockey? Dr. REALLY does not want to operate. His AVM is too much wrapped up in the motor strip for his right leg and hand. He's batted it to the director of Proton Beam Radiosurgery. They will discuss it next Thursday at their team meeting, but ultimately there are risks with radiation that might also be unacceptable. They may say it's too risky too. Dr. Smith just gently prepared me to accept that at this time we need to sit on this and scan every few months, and if the thing grows or looks scarier, we operate. He told me that things are changing so fast in the AVM world, that in a couple years the surgery might not be so risky because of new developments. What scares me now is the dismantling of the ACA - Obamacare. Take away my insurance and Payton never gets surgery until it's too late and they have to do it because he's catastrophically stroking. I don't even know how to live with this. He tells me it's a new diagnosis and he knows we're scared. He says in a few months we'll learn to live with the fear. How do you learn to live with knowing with some certainty what will kill your child, but not having a shred of a clue how much time there is? I wish we'd never found this. The knowledge is too much to bear. I'm so afraid for him.
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Update 6
Posted by Dawnn Walters
2 months ago
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There was only one call from Boston Children's today. Payton does not have to get his braces removed. They will be able to use the data from his fMRI. They are close to completing the compilation of data, but still not done. So still we wait...

It was a hard day. Payton came down the stairs this morning with tears in his eyes and a "different" headache. He has gotten the cold we've been trying to avoid. His throat is scratchy, his nose is runny. It was nearly impossible to force myself to go to work today, but I gave him some Motrin, tucked him into my bed and left him home alone, against my better judgement. I FaceTimed an hour later when I got to work and he told me the Motrin worked, which made me feel better. It was a busy day at work, but stressful stuff there too. Then Kirsten's school called to tell me she hit HER head at school. She's fine, but I'm at the end of my ability to deal with adulting today. Thank goodness for Hamlin Pizza Shack or we'd be eating cereal for dinner. I could not face cooking tonight.

The waiting is excruciating for all of us. We are mentally and emotionally wrung out. I just want to stay home and close ranks with our immediate family, but life must go on. Have to earn a living, pay the bills, and plaster on the smile, no matter how strained that smile may be.

Big thank you's to Elisabeth for being my media screener the past couple days. Also to James, Vangie, Shelby and the rest of the KFD crew working on the pasta dinner fundraiser. And to Alyssa and Melissa with the LuLaRoe Fundraiser. It all sounds spectacular. We are blessed.
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Update 5
Posted by Dawnn Walters
2 months ago
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Last night was Payton's functional MRI. It was interesting to see how they had Payton read, speak, process information, and move his fingers and toes to see where the motor and speech processing centers are in his brain in relation to the AVM. This test will be a huge part in making the decision whether to remove the AVM or to do radiation to try to shrink it. If it is very tangled in the motor center and it will be difficult to remove it without too much risk of paralysis, radiation might be a better option. It will take around a week to process and compile the data from the fMRI. Dr. Smith is going to discuss it with his team, including what he called Proton guys who do the radiation and they will all come up with a recommendation. At that point we will return to Boston for the verdict.
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Update 4
Posted by Dawnn Walters
2 months ago
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We are in Boston in the middle of what promises to be a historic snowstorm. We're just hanging out in the hotel room because the radiology department called an hour ago and put us on standby. They anticipate some no-shows today and when someone doesn't show up they will call us and have us dash down the street. We hope they call soon while there's not a lot of snow in the road to deal with. Last night we practiced our Uber skills so we would know what to expect. It's so convenient! Wish we could Uber in NYS!!! Scott and I are working on a puzzle at the table. Payton is just relaxing. He has a constant headache and when he does his eye exercises to re-sync his vestibular senses with his vision he gets nauseated and dizzy.
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$5,225 of $5,000 goal

Raised by 95 people in 2 months
Created January 31, 2017
Elisabeth Celso  
on behalf of Dawnn Walters
PJ
$100
Paul Jennings
28 days ago
$100
Anonymous
28 days ago
DB
$25
Dawn Brower
1 month ago
HK
$26
HANAH KROPF
1 month ago
$50
Anonymous
2 months ago
1
1
AC
$100
Angela Chittick
2 months ago
1
1
TA
$100
Tricia Andres
2 months ago
1
1
EC
$100
EMPIRE AMATEUR HOCKEY CONFERENCE
2 months ago
1
1
WB
$79
Webster Cyclones Bantam Major Boys
2 months ago
1
1

Best Wishes from your brotherhood

$20
Kelly and Joe Furness
2 months ago
1
1
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