Bethany Rogers reads to her son Landon in their home in Kenai in 2005.
Clarion file photo
Landon Rogers loves the Pixar movie “Cars,” especially the character Lightning McQueen. And just like that little red sports car, once Landon gets going, he’s hard to stop.
“He likes to have somebody play with him,” said his grandmother, Bonnie Rogers. “He likes to grab their hats and take off running. He’ll go out in the garage and get in his dad’s car and pretend like he’s driving it.”
This is what a good day for Landon looks like, but in the Kenai boy’s four years, these have been few. In and out of hospitals for most of his life, Landon suffers from severe failure to thrive and wasn’t expected to live past age 3. After numerous stays at Children’s Hospital at Providence in Anchorage and Seattle Children’s Hospital and Medical Center, as well as a visit to UCLA Medical Center in California, doctors have reached a diagnosis they’re confident with and may be able to give Landon a chance at a normal life.
“He’s been sick his whole life, and (the doctors) never knew why,” said his mother, Bethany Rogers, who arrived with her son in Seattle on Monday. She said after doctors in Paris examined his blood and tissue, Landon was diagnosed with Griscelli syndrome, a rare disorder that leaves children with a compromised immune system. “Only 31 people worldwide have Griscelli syndrome. He would be case 32,” Bethany said.
She said her son also was diagnosed with HLH, another rare disorder in which unhealthy cells attack and the body’s blood cells. In order to combat the two disorders, doctors will use chemotherapy to eradicate his existing immune system, and a bone marrow transplant to give him a new one.
“It’s been tough,” Bethany said. Since beginning chemo, Landon battled several infections, including pneumonia. He’s been in isolation in order to prevent further infection. “He can catch the common cold that we pretty much live with every day,” she said.
Over the years Landon has adapted to the hospital’s routine. Bethany said when nurses come in to take his blood pressure Landon knows to lift his leg up and when they take his temperature he’s able to put the thermometer under his arm. He’s even capable of monitoring his own morphine pump every 20 minutes when it’s activated.
“I can’t believe how fast he picks it up,” Bonnie said. “You’d be surprised up there in the hospital how much he knows what’s going on and what they’re doing with him.”
While Bethany is with her son in Seattle, her husband, Robert Rogers, stays in Kenai with the rest of the family.
“It’s hard,” he said. “Really hard. We’ve been doing this for almost five years. He’s really tough.”
On Landon’s good days his favorite things to do are color, watch movies and play video games, Bethany said. He can go strong for 45 minutes before getting tired.
“When he’s not so sick, he plays like a normal 4 year old,” Bethany said. “He runs around and causes havoc. He’s fun to be with.”
Bethany’s 18-year-old daughter, Sierra, works at Happy’s Espresso in Anchorage and helps raise money for Landon. By putting up flyers at work, Sierra said she was able to raise $400 for her brother. She’s also been in touch with the “Bob and Mark Show” at KBFX 100.5 in Anchorage, as well as Clear Channel’s “Cash 105” in order to make people aware of what her brother is going through. Happy’s Espresso also will hold a fundraising day for Landon on June 16.
“People are giving money every day,” Sierra said. She said one person brought a flyer to work and raised $300, while another put in $100.
Bethany said there is an account in Landon’s name at Alaska USA, account No. 540431, for people who are interested in donating.
“He’s very strong,” Bethany said. “I would have given up a long time ago.”
Landon will remain in the hospital 100 days after the bone marrow transplant in order to make sure his body takes to it, his parents said. “He just wants to be a little boy and be out of the hospital,” Bethany said. “He says he wants to go home because his toys miss him.”
Jessica Cejnar can be reached at firstname.lastname@example.org.
Peninsula Clarion © 2016. All Rights Reserved. | Contact Us