(BEDFORD) – Dumon Strong 6th Annual Ride to benefit 6-year-old Kevin Lane Jr. who loves the color neon green and pink, Mickey Mouse, Spider-Man, Play-Doh and Legos, chicken nuggets and pulled pork sandwiches.
Registration begins at 10 a.m. on June 8th. Kickstands up at 11 a.m. The cost to ride is $20 per motorcycle or Jeep. The ride will begin at the Murray Forest Park at the Stone City FOP Lodge #94 and will end at Buffalo Wings & Rings in Bedford.
There will be a 50/50 raffle held during one of the stops on the ride.
Dumon Strong Annual Ride
Kevin Jr. is the son of Kevin and Malissa Lane, both Air Force veterans. He has three siblings.
Kevin Jr. is suffering from Craniopharyngioma. Craniopharyngioma is a rare type of noncancerous (benign) brain tumor. Craniopharyngioma begins near the brain’s pituitary gland, which secretes hormones that control many body functions. As a craniopharyngioma slowly grows, it can affect the function of the pituitary gland and other nearby structures in the brain.
As of Thursday, the family placed this post on Kevin Jr’s Facebook page.
“Kevin Jr’s oncologist called to let me know the tumor board had reviewed his MRI. They agree it (the tumor) is probably showing some growth, but it is slow enough they feel comfortable waiting 3 months for his next MRI. The cystic portion had shown up extremely bright and the oncologist had some concerns. They believe it is most likely protein caused by tumor cells dying and his body hasn’t had time to reabsorb them. He said he knew the tumor would always be there and he believes the radiation is working on slowing everything down. His speech has been getting clearer and the oncologist noticed that he could understand him better than pre-radiation. As long as he shows progress and no symptoms, they don’t feel the tumor growth needs to be removed right now. This is good news!”
He has lost vision completely in one eye, partially in the other and has had 7 brain surgeries.
His tumor was discovered after he was having trouble seeing and his parents took him for an eye exam.
Kevin Jr’s world turned upside down after a year of struggling to find the correct prescription for glasses.
Kevin Jr. with two of his siblings.
“He was first diagnosed with a prescription so high I questioned he could have been that visually impaired and no one noticed. When the glasses didn’t work the doctor told me it would take time for his eyes to adjust. After several calls and months, with his eyesight declining, Kevin Jr was referred to a pediatric ophthalmologist,” says his mom Malissa. “The ophthalmologist noticed Kevin Jr’s eyes twitched too much for the machine to accurately analyze them.”
A new prescription was ordered but it didn’t help.
“Suddenly, our family noticed a rapid decrease in Kevin Jr’s vision,” she added. “He ran into walls, couldn’t find our house, and refused to play. He was given an urgent appointment where the ophthalmologist decided to send him for an MRI. The MRI showed a massive tumor on his pituitary that had caused optic nerve atrophy.”
Kevin Jr. never will see out of his left eye again. Vision in his right eye is blurry.
The tumor, craniopharyngioma, has no cure or standard prognosis since it is so rare.
“Every step of the way we are forced to make decisions that cause less damage but keep our baby with us,” Malissa added.
The doctors have removed as much of the tumor as they could, but will monitor its growth for the rest of Kevin Jr’s life.
Kevin Jr. after one of his many surgeries.
The family has high medical bills and expenses of travel for Kevin Jr’s treatments.
Kevin Jr. participates in several different therapies including occupational, physical, vision and speech and suffers behavior and cognitive impairment from the surgeries and treatments.
“He has lost some of his previous abilities and becomes frustrates with his limitations, ” Malissa added. “He was cleared to ride a bike with training wheels, but forgot how to pedal and broke down begging me to fix his bike to make it go. He is easily exhausted and hasn’t regained his stamina. Some of the medications, including his steroid to prevent renal failure, are not covered by insurance.”
The family has a GoFundMe page to help pay for Kevin Jr’s medical expenses.