By KATE LUDLOW
With a head of thick, golden hair, and a mischievous grin, it is hard to tell how sick Landon Pemberton really is. But as he approaches his sixth birthday, Landon is inviting everyone to his birthday party, where along with the bouncy houses, movies and snacks, his family will be working to raise money to help defray some expenses incurred by Landon’s illness.
“When he was born, there was no indication that anything was wrong. He was a normal, healthy baby,” says Landon’s mom, Valerie Bowling. “Around the time he was seven months old, he started throwing up a lot. It was only baby food, though, and not milk, so it was weird. I didn’t think it would be a stomach bug or something like that, if he was only throwing up the food.”
After a few days, things started to get worse.
“He was projectile vomiting, and he was screaming and in tears,” she said.
Mrs. Bowling decided to take him to the doctor.
“When you’re a new mom, you get scared that the doctors will think you’re crazy, and Landon didn’t seem that sick,” she said.
Landon was immediately sent from the doctor’s office to Dell Children’s Hospital, and a diagnosis came back. Landon had idiopathic autoimmune hemolytic anemia, a blood disorder characterized by a drop in the number of red blood cells due to increased destruction by the body’s immune system.
“In most cases there is a reason that can be found that triggered the disease. In Landon’s case we can’t seem to find a cause or a cure,” says Renata Simmons, Landon’s grandmother.
“It’s so bad with this disease,” says Mrs. Simmons. “You go to bed, your child is healthy, you wake up the next morning, and your child is sick. They’re pale, their eyes are yellow, his lips would get white like a ghost, he would have no color at all, and then that’s when we know to take him in,” says Mrs. Bowling.
“A lot of people lose their child right then,” says Mrs. Simmons. “Because when we took him in he was at a four (his hemoglobin level) and they said ‘you could have had organ shutdown.’”
“I asked is there any way I could have known? I felt like a bad mom. They told me that doctors have lost their own children over this, because they didn’t know. They said that that is how quick it comes, and it’s more dangerous in younger kids. They don’t know a lot about it,” says Mrs. Bowling.
For nearly five and a half years, Landon has gone through a barrage of treatments. Over 150 blood transfusions, plasma transfusions, four different types of chemotherapy, and so far, nothing has been successful.
“If the last chemo fails then we must have his spleen removed and then he has a 50/50 chance of a positive outcome,” says Mrs. Simmons.
“We’re running short on options,” says Mrs. Bowling, “This is when it gets hardest.”
The disease is classified as idiopathic, because there is no apparent cause for it.
“Usually, this disease, there’s a reason. Oh, they gave mom some penicillin during her pregnancy or something crazy that set it off. We’ve looked through all my records, I didn’t take any strange meds while I was pregnant. They would look for an autoimmune disease that causes it, he has no underlying causes,” said Mrs. Bowling. “There is no reason that he should have contracted this. It’s the craziest thing. So, they don’t know exactly what to do. Most people that have it are older, like teenage, pre-teens that they’ve dealt with, so they told me, ‘we’ve dealt with one other baby that has had this and that wasn’t even us, it was a doctor in Michigan that we know.’ So they were keeping in contact with this doctor.”
Currently, Landon sees a rotation of about nine doctors, including an oncologist, a rheumatologist, a physical therapist and a behavioral specialist.
“Landon has to take steroids, so that causes him to have some behavioral issues,” says Mrs. Simmons.
“Through all of this, he’s been strong,” says his mother. “He woke up, after having surgery, and the first time, they put him on ketamine, a really strong tranquilizer. I wasn’t happy with that. He woke up screaming, and freaking out a bit. He has neuropathy and hypermobility, he’s been on the chemo so long, it takes away your muscle mass. It starts in the front of your foot and then it goes up your leg. He’s been on it so long, now he’s been getting these leg pains. He woke up one day and he was just screaming, he couldn’t walk, so we had to carry him to the bathroom. After his second surgery, it was a bit better. He woke right up and said, ‘Mom, I really want some pizza and tater tots with cheese.’ He just popped right back up.
“He’s been in the ICU four times, and that’s pretty scary. That’s when it’s ‘we’re going to give him new blood, and he may reject it,’” says Mrs. Bowling.
Landon plays an active role in his own care.
“He can do his own dressing. Whenever we have to do a sterile dressing change, there’s about seven or eight things you do, and he knows, when you put the gloves on you hold your hands together so you don’t touch anything. He knows about all that, and he has this little Chemo Duck, it’s got a broviac line (catheder), so it shows the kids, this is how you do this. He had seen us flush his port so many time, he literally gets it all out and he lays it all out and he gets his gloves on and he’s looking at this stuff and he says okay, then he’ll grab, first thing, he’ll grab the ChloraPrep and click and and he’ll clean the area, and he won’t blow on it because of the bacteria in your mouth. He does everything in order. We just watch him like, ‘Are you kidding me?’” said Mrs. Bowling.
To help himself get through it, Landon leans toward a pretty powerful group for inspiration.
“His closet is full of costumes. He wears them to the hospital,” says Mrs. Simmons.
Landon’s closet is stuffed full of superhero costumes – Spiderman, Captain America, The Hulk, Batman, Landon has them all. For Landon’s Make-A-Wish gift, the family went to Disney World, and while visiting Universal Studios, they were able to meet some of Landon’s heroes.
“All The X-Men cast was there. Landon got to meet Wolverine, and see the whole crew,” his mother said.
During the visit, which was near the end of November, the Disney crew set up a small village, where every holiday of the year was celebrated. Landon also participated in a Village Idol competition, where one of his friends sang, and he and another boy did break dancing behind her.
“Landon loved singing,” says Mrs. Bowling. “Even when he was a baby, he was automatically keeping beat. We caught him the other night, he was singing in his sleep.”
In addition to handling Landon’s medical care full-time, Mrs. Bowling also home schools her son.
“We tried starting him in a regular school, but it didn’t work with his medical needs,” she said.
Finding employment that works with Landon’s care has been difficult as well.
“I would get a job, and then two or three weeks in, he would go back to the hospital, and I’d have to start all over when he got out. I work in child development, which I can’t do, because I can’t have him around sick kids,” she said.
“She’s something else,” says Mrs. Simmons of her daughter. “She never leaves him alone. She barely leaves to go get toiletries or handle her house.”
“I used to sleep in his crib at the hospital with him,” says Mrs. Bowling. “The nurse actually thought I was a really big kid one night, because I would just crawl up in there and sleep with him.”
Through a previous benefit, Mrs. Bowling and her husband, Goebel, were able to secure a small apartment two exits away from Landon’s hospital.
“They were constantly running back and forth, wasting gas. Just sending someone to your house to pick something up, someone had to go get a key,” says Mrs. Simmons.
For Landon’s upcoming Benefit and Birthday Bash, the family is pulling out all the stops. Thanks to the kindness of friends, they were able to secure a bouncy house and an inflatable outdoor movie screen. They will be serving fresh popcorn and candy, and there will be barbecue and a cakewalk.
A number of local residents and business have donated items that will be auctioned during the day. There will be live music from Christian Ramos, as well as an open stage for any other musicians who want to join in. There will also be face painting and hair coloring. The party is open to the public and all are invited.
“Landon told me he wants everyone, just everyone, at his birthday party,” says Mrs. Bowling, “But is he is looking forward to one private moment. He wants to get everyone out of the bouncy house and enjoy it alone for a few minutes.”
Landon’s Benefit and Birthday Bash is Saturday, Nov. 10, from 11 a.m. to 9 p.m. at the Andice Community Center, located at 6600 FM 970 in Andice. For more information or to find out how to help Landon and his family, e-mail firstname.lastname@example.org.