AIKEN — The big red “S” on Landin Householder’s chest looks like that of a certain superhero, but it stands for something else.
Supermedicine – in his case – chemotherapy, said Landin’s mother, Nicole.
“He’s really big into superheroes,” she said. “So the easiest way for us to describe it is that is supermedicine to make him feel better.”
Landin, 5, has an extremely rare blood disorder called Langerhans cell histiocytosis, in which his body produces too many immature Langerhans cells – which would normally regulate the immune system but in his case cause it go awry.
Landin’s problems began as a severe skin rash years ago but has since disrupted his gastrointestinal system and caused other problems.
The disorder affects 1 to 2 people per 100,000, according to the Genetics Home Reference of the National Library of Medicine, so rare that it took years before Landin got the correct diagnosis. His parents had to take him to Texas Children’s Hospital in Houston to find someone with expertise in treating it. Chemotherapy was recommended a couple of years ago, but because Landin seemed to be doing so well his parents decided against it, Householder said.
“We just kind of watched and waited,” she said. “The week of Thanksgiving, he got really sick and we were in the hospital for a week. We didn’t have any options. Chemo was it.”
Landin has received chemotherapy for the past six weeks at Egleston at Children’s Healthcare of Atlanta because a doctor there agreed to work with Landin’s doctor in Houston. The doctor in Atlanta has a patient very similar to Landin.
All that travel back and forth means hundreds of dollars just for gas. It also cost Householder her job.
“I basically had to demote myself because I couldn’t keep up with my hours,” said Householder, who worked as an assistant manager in sales but declined to say where. “I don’t think I could have found a job that would keep me.”
The family has health insurance now but “our insurance only covers so much,” Householder said.
The bills have just started to come in.
“The last doctor bill we got for the hospital stay was $12,000 for two days,” she said. “One day of testing for Landin was $24,000. It was a lot.”
In fact, Householder can’t even guess what the debt is so far.
“I have no idea,” she said. “I have a stack of bills, but I don’t look at them. We pay on them as we go. We pay what we can pay.”
The hospital “has been beyond amazing working with us with bills,” Householder said, “letting us do $5 and $10 payments here and there.”
But more help is needed. Landin’s preschool program at Trinity United Methodist Church is helping to organize a fundraiser that will include a bake sale, a silent auction and a balloon release.
“We’re really hoping to raise a good bit of money so that it will just take some of the financial burden off Mom and Dad because it’s enormous,” said Lila Crotwell, the director of the program at Trinity.
The family is fortunate to have the Ronald McDonald House to provide low-cost lodging in Atlanta; otherwise, “I don’t know what we would do about staying somewhere,” Householder said.
Landin’s place is back with his classmates in Jennifer New’s class. Normally, the kids are ready to race outside and play, but recently decided to make cards for Landin, she said.
“They didn’t play at all for a solid hour,” New said. “They sat there and made Landin cards. We didn’t even make it outside. It was beautiful, and they stayed inside to make cards for their buddy.”
From the noise outside the classroom, they clearly like it when he is around.
“They bounce off the walls when Landin gets here,”
A few more months of chemotherapy lie ahead. He will be re-evaluated at six months to see whether something stronger is needed, his mother said.
“We’re hoping this one works because the next chemo is kind of rough,” she said.
It has been a difficult struggle.
“When you have a child, you always think about all of the fun stuff you get to do with your kids,” Householder said. “You never think chemo is going to be something you have to experience with them. It’s rough.”
It is difficult to explain to a 5-year-old why he has to have a tube attached to his body and why he has to travel a long way for chemotherapy that will make his hair fall out.
Just before his first treatment, Landin turned to his mother and asked, “Why am I different?”
“I said, ‘You’re not different,’ ” Householder said, choking back a sob. “I said, ‘You’re special.’ ”
That is what the “S” on his chest stands for.