HOPE FOR A MIRACLE

A sign is hanging above three-year-old Skylar Maxson's bed. It's been there since she entered Riley Children's Hospital in May with an inoperable brain tumor known as a diffuse pontine glioma.
The sign, printed in black on a white sheet of paper, simply reads, "Where there is great love, there are miracles."
Miracles are certainly what Skylar's family is hoping for these days.
Skylar's grandmother and adoptive mother, Connie Maxson, Monticello, is still in shock over her little girl's rapid decline in health due to the tumor.
The afternoon of May 15, Connie said she recalls Skylar was sitting on her lap and had just hopped off when it became clear something wasn't right.
"When her feet touched the floor it was like the floor disappeared. She was dazed. And she had been walking and dancing around 30 minutes before it happened," said Connie.
By the time Skylar could be transported to Riley from White County Memorial Hospital, she had lost the ability to walk and talk, Connie said. Things went from bad to worse when Skylar developed breathing and swallowing problems as well.
"It's a whole different life now," Connie said. "She was always smiling, just her happy little self. She put my face in her hands and said 'Mommy, I love you.' That's the last time she talked to me."
A diffuse pontine glioma is a malignant tumor that originates in the supportive tissue of the brainstem. These tumors generally affect children between the ages of five and nine years, and girls and boys with equal frequency. They are rapidly growing, which explains Skylar's seemingly instantaneous reaction to the tumor.
Symptoms include impaired walking, weakness in arms and legs, inability to control facial expressions, swallowing, chewing and eye movements due to problems in the cranial nerve, and headaches and vomiting due to increased pressure on the brain.
Treatment for these tumors is limited to radiation and experimental chemotherapy regimens; however, the prognosis despite such measures is bleak. According to information from the Children's Hospital at Boston, children with diffuse pontine gliomas live on average just one year past diagnosis and 20 percent survive two years. Skylar was given just six months to live as of May, said Connie.
Amid the heartache hope remains, and her family holds fast to the fact that Skylar is entirely healthy save for the debilitating tumor. However she has already endured more than 30 radiation treatments, and the side effects of the steroids she takes to keep the tumor and resulting swelling from harming her brain.
"The doctors at Riley said only God could give Skylar another day," Connie said. "They've kept her alive but no child ever lives from this. It's very rare and there's very little research done."
More help is needed than what doctors can give, said Connie's good friend June Daulton. Connie is unable to work because of her medical conditions, which include diagnoses of lupus and multiple sclerosis. Also, because any money on hand has been required for various things since Skylar's illness struck, the family has lost their home. Connie has also adopted Skylar's brother, 11-year-old Tristan, and raised him since he was three months old.
"You just never know when something like this is going to happen," said June, of her best friend and young Skylar. "Connie and I grew up together; she's more sister than my sister is so I'm just trying to help them anyway I can."
June has set up a trust fund for Skylar so that a trip to the Texas cancer institute might be possible and is helping the family find a home in the Monticello area to come back to when they leave the hospital.
Although Connie herself is not in perfect health, she said she'll spend whatever energy she has helping Skylar fight her sickness.
"I don't have time to get sick because she's dying and fighting. I'll fight for her as long as it takes and if she gets too tired, I'll do it for her. You just don't give up. You don't give up." www.thehj.com "Hope for a miracle" reporter Abby Leitz