Community rallies behind 10-year-old with tumor

Two weeks ago today, life took drastic turn for the family of 10-year-old Makanda Williams of Ewing. That was the day her parents, Sarah and John Carlton, were told by doctors that Makanda was very ill.
She was diagnosed with diffuse intrinsic pontine glioma, a very aggressive and rare childhood brain cancer that strikes children between the ages of 3 and 10.
There is no cure. The survival rate for children with this particular tumor is about one percent.
"We were so blind-sided," Sarah said. "Now that we know, there were things leading up to this."
Those "things" included headaches that her parents attributed to her not wearing her glasses like she should. Makanda also demonstrated a lack of focus and concentration during the last part of the school year, as well as what her mother described as a kind of "smirk" when she smiled. Then she had an eye that kept watering.
On that fateful Wednesday, Sarah made an appointment with Makanda's doctor, while Makanda went with her Ewing Grade School classmates on a field trip to Evansville, Ind. While she was gone, Sarah began researching the symptoms. "The word 'tumor' came up," she said, "but who really thinks that? I kept thinking maybe it's Bell's Palsy or a nerve."
While Makanda was on the field trip, she went down a slide head-first and struck her head. "She came home and told me, but she seemed OK," said Sarah. "We went on to softball practice."
However, later that evening, Makanda became dizzy. Fearing a concussion, The Carltons took her to the emergency room in McLeansboro.
"They took her for a CAT scan around 9 p.m.," Sarah said. "They came and got me around 11:45 and told me about the tumor."
From that point, things moved quickly. Medical personnel came in an ambulance to transport Makanda to St. Louis Children's Hospital. There, specialists began to evaluate Makanda's condition and provide treatment options.
But the news was not good.
Makanda's tumor is located on the brain stem and is blocking off brain fluid from traveling down her spinal cord. It lies directly on an area of the brain called the "pons," which controls the basic functions such as breathing, swallowing, talking and walking.
Sarah said the first order of business is for doctors to try and reduce the fluid pressure on her brain.
"We have some big decisions to make," she said.
Those include whether or not to allow a biopsy to qualify Makanda for clinical trials.
"Right now," Sarah said, "there's not enough success there for me to feel comfortable with take the risk."
Sarah and John are arming themselves with knowledge as they research various hospital and treatments from around the globe.
"We need to explore every option," she said. "I can't have any regret later on. I don't want to say a year from now I wish we had done this or that."
There's a certain amount of anger, too. "Why her?" asked Sarah, who said her emotions have run the gambit from hurt to sad to scared to angry.
That's a question that many who know her have asked, including Kristin Ing, the principal and superintendent at Makanda's school.
"Makanda is very bubbly upbeat, and full of life," Ing said. "She is eager to be engaged and social with the other kids."
Ing said Makanda is very creative with her hands and loves music, "especially the piano. She has been taking lessons from our music teacher."
Ing said Makanda, who has helped watch over Ing's one-year-old during ball practices, is always eager to help others.
Now the community, family and friends have come together to give back to the little girl who gives to others.
Ing said that Shelly Allsopp, a parent with the Ewing district, collected orders for "Makanda Strong" shirts.
"She also has a child that suffered from cancer," Ing said, adding that Allsopp is a resource for the family as well as helping to fundraise.
Family and friends are holding a benefit this Sunday at the Benton Eagles from noon to 4 p.m. The event will include a barbecue lunch and musical entertainment by Taylor and Caleb Kearney as well as multiple raffle drawings, a silent auction and a live auction with guest host Jim Muir. Auction items include gift baskets, hotel, casino, and racing packages, spa and tattoo sessions, and a gym membership.
Muir said he is honored to help.
Monetary donations can be made to the Medical Fund for Makanda Williams at the State Bank of Whittington.