BAUXITE — Five-year-old Lathaan Hohn is not much different from any other kid. He is obsessed with dinosaurs and wants to play outside in his tree house with his older brother.
“That’s like the thing we hear the most: ‘He doesn’t look sick,’” said his mom, Allysa Hohn.
In April, Lathaan was diagnosed with kaposiform hemangioendothelioma, or KHE, which is a vascular tumor. According to www.texaschildrens.org, “KHE is a rare and aggressive vascular tumor and is an abnormal growth made up of blood vessels.”
“Unfortunately, in Lathaan’s case, [the tumor] is too large and too invasive for surgery because it goes through his spinal cord in five different locations, so he will never be able to have it fully removed,” Hohn said.
“Our hope at this time is, we are doing a drug that is similar to chemotherapy, just a little less hard. Hopefully, it will shrink the tumor enough that the areas that can be operated on will shrink enough that they will be able to be removed.”
However, she said her son “will always take a drug that is similar to chemo, just to keep [the tumor] at bay,” she said.
Lathaan and his family will travel to the Mayo Clinic in Rochester, Minnesota, on Aug. 27 and to Boston Children’s Hospital on Sept. 20 for checkups. To help off-set some of the cost of the family’s travel, Hohn is organizing a Back to School Benefit from 5-8 p.m. Saturday at the Bauxite Historical Museum. There will be live music by Nathan Perry, Brad Byrd and Jon Atchison.
“I guess really what made it happen was our own son’s diagnosis,” she said. “There aren’t as many resources as you would think for families who have terminal illnesses or debilitating issues that aren’t cancer.
“My hope is to create an event that is fun for the community but still allows there to be some knowledgeable aspects in regard to what is going on in our lives and then, hopefully, do the same for other families.”
Admission to the concert is free, but there will be tickets for inflatables and other games that will cost $1 each or $20 for a wristband. There will also be merchandise for sale, such as T-shirts and custom bracelets. Hohn said she tried to make the cost fair and on the low end to get as many people interested in the event as possible.
“By having three different artists, we tried to cater to and bring in all of us and meet everybody’s needs,” she said. “In the future, we hope to choose artists in different genres. That way, this is not known as a country-music festival or some other genre.
“I want to cater to everybody.”
She said she doesn’t have a set goal for how much she would like to raise. She said the money raised this year will go to Lathaan to cover some of his medical expenses, but at some point, she wants people in the community to nominate families who are in similar situations.
“Our tumor is so rare that I doubt we will meet another one in our area who has the same story,” she said, “but they might have medical expenses that outweigh what they bring in, and hopefully, we can bless them by having this event each year.
“That would be our long-term goal.”
Hohn said in regard to Lathaan’s diagnosis, “there haven’t even been enough case studies on it to really know what causes it.”
“We did a full gene testing, and it is not anything genetic,” she said. “I know there is a case study being done through Boston and the Mayo Clinic …. The medicine is completely experimental, and we are unsure if it will work, because it’s only been in use for less than five years. It is still such an unknown variable.”
Hohn said that from the moment Lathaan was born, he had what doctors called a stiff neck. He was meeting his milestones at 4 months old, but he was never able to roll over to the left side or use the left side of his head with full range of motion.
“We did therapy for two years, but it never really got better,” Hohn said. “By the end of January [of this year], he lost movement in his right leg while he was at school, and the school called us, and they told us he was unable to walk.
“It only lasted a couple of hours, but I called the doctor and told him to do a full-body MRI.”
And on Feb. 1 of this year, when the tumor was found, that’s when the family’s journey really began.
“I feel like we got a false sense of relief,” Hohn said. “Once we got the diagnosis, it was more troubling than anything because we didn’t have this definite line of ‘This is what we are going to do, this will heal him and this is what the end result is going to look like.’
“For us, we are always going to be in a gray area of ‘Is this working?’ Both of the drugs he is taking can cause liver failure and a special type of pneumonia that can cause lung disease. For us, it is more burdening, troubling and heartbreaking.”
Hohn and her husband, Drew, have been married for seven years. They have two other children: son Kanaan, 6, and a daughter, Adeline, 3. Drew is an art teacher at Bauxite Middle School. Allysa said because of Lathaan’s tumor, he is more susceptible to disease, so he will have to be home-schooled, and she said it has caused the family to be more vigilant when it comes to germs.
“There has definitely been a lot of adapting,” Allysa said. “All of a sudden, we changed our course to another realm, especially with cleanliness.
“Every little thing imaginable changed without us even realizing it.”
Staff writer Sam Pierce can be reached at (501) 244-4314 or spierce@arkansasonline.com.