Tonganoxie Shannon and Denise McCullough realized something was wrong when their son Kurtis didn't begin speaking as early as other children his age.
The McCulloughs were given a variety of reasons; their 2-year-old might have autism or another disorder.
But when the Tonganoxie couple noticed shortly after Halloween that Kurtis had stopped using his right arm - he still had trouble maneuvering the rolling hills in the family's back yard without falling - they took him to his pediatrician, who sent them to a neurologist.
The McCulloughs went Dec. 5 to Children's Mercy Hospital in Kansas City, Mo., where they were told that there was a 2-inch tumor growing inside Kurtis' brain.
"It's was pretty shocking news obviously," Denise McCullough said. "It was probably the worst day of our lives."
Kurtis was immediately admitted to Children's Mercy, where doctors performed a biopsy and drained a cyst growing alongside the tumor.
After a week's stay and follow-up MRIs, they determined that Kurtis has juvenile pilocytic astrocytoma, a cancer that affects the brain and nervous system. He is now home in Tonganoxie with his parents and 4-year-old brother, Trent.
Kurtis is too young for radiation and the tumor is inoperable because of its location inside his head - it is attached to his brain stem and intrudes into the cerebellum, the portion of the brain that controls motor skills.
Chemotherapy is an option, and the McCulloughs believe they already have stopped the growth of Kurtis' tumor with diet change.
The toddler attends physical therapy with a Lawrence therapist who is a brain cancer survivor.
But for the past few months, between shifts at the Kmart Distribution Center in Lawrence, Denise McCullough said she has spent countless hours on the Internet, learning more about brain tumors and researching alternative treatment options.
While Kurtis' tumor seems to be under control, the cyst in his brain continues to grow.
The treatment option that has given the McCulloughs the most hope is called dimethyl sulfoxide (DMSO), an industrial solvent that has been claimed to stimulate the immune system and attack diseases. DMSO, however, is only FDA-approved in treating a bladder inflammation known as interstitial cystitis - not tumors.
Therefore, the McCulloughs' insurance company will not cover the $6,500 treatment, which takes more than 20 days at a Tulsa, Okla., treatment center.
They cannot afford the treatment but said, as soon as they can, they will make the trip.
The McCulloughs are receiving some assistance from charitable organizations like beHeadStrong.org, an Overland Park not-for-profit established by a group of brain tumor survivors. Help with taking care of Trent through Genesis Christian Academy and Preschool in Tonganoxie also has gone a long way.
For those who want to help the McCulloughs, an account has been set up at First State Bank and Trust on U.S. Highway 24-40 in Tonganoxie.
There are almost 19,000 new cases of primary brain and central nervous system tumors diagnosed each year. Brain tumors are the leading cause of death from childhood cancers.
"It's about the hardest thing you ever have to face," Shannon McCullough said. "But through faith, you try to get through it."