Cancer Care

For about a year now, Payton Wright’s parents have been posting updates about her health on their Web site.

Payton, a precocious 5-year-old girl from Lakewood Ranch, is battling medulloepithelioma, a rare brain cancer that has devastated her body, left her bound to a wheelchair and forced multiple invasive treatments.

Originally, the blog created by Patrick and Holly Wright was intended for friends and family. But word spread, and now thousands of people from as far away as South America are following Payton’s treatment.

Many of the reports in the blog have been hopeful, like when Holly Wright wrote how eager Payton was to leave the hospital. “She will ask me numerous time a day to spy on the doctors and nurses so that I can sneak her out,” Holly wrote last June.

But a few updates are far more grim.

Payton’s parents have spoken of “screaming inside.” And photos taken over the course of Payton’s treatment reveal the suffering she has endured.

A video clip shows her struggling to swallow because of the radiation burns to her esophagus. One picture shows an unrecognizable Payton, swollen from the steroids she was prescribed.

In the next picture she looks like a famine victim, emaciated and weak as someone supports her in the bathtub. In yet another video clip she is scratching at her face because a medication she was taking gave her the sensation of bugs crawling on her skin. To keep her from hurting herself, she wore gloves for weeks.

The past year has been tough for the entire family. By the age of 4, Payton had already received the maximum amount of radiation her little body could handle in a lifetime.

And now, the news has gotten even worse. On Thursday the family learned Payton’s cancer had spread to her kidneys and liver.

In recent months, Payton’s parents have accepted that there is nothing more conventional medicine can do for their daughter and have kept her at home, away from hospitals, and opted for alternative medicine.

“That (Payton’s latest MRI) was the last we’ll ever do,” Holly Wright said.

Pushing for Payton

Whether due to the powerful content of the blog, its reach across the Internet or simply because they empathize, the local community has rallied behind Payton.

East Manatee residents organized fundraisers ranging from hair cut-a-thons to a celebrity party hosted by sports commentator Dick Vitale. To date, supporters have raised more than $200,000 for Payton’s care.

Tracy Fox, a parent who has a daughter who attended the same preschool as Payton, was so touched by Payton’s plight that she wrote a book, “Seven Little Angel Fairies,” for her as a gift.

“I kept thinking if that was Lily (Fox’s daughter), she would be so scared,” Fox said. “So I wrote the book of fairies, all with a different emotion and how they could be there for you.”

Payton, with her upbeat outlook on life, has found ways to keep herself from feeling too blue.

Often tired and unable to walk, Payton remains a personable and cheerful child. She loves rock ‘n’ roll, INXS is her favorite band, she likes to drink tea and Shirley Temples, and “The Parent Trap” is her favorite movie.

A self-described “rocker girl,” she thinks she is cancer-free.

When her mother asks her what she wants to tell the doctors, Payton said, “I am going to walk in there and say, ‘I’m better.’”

Payton’s parents have tried to be honest with her about her disease. But after a February MRI showed the cancer had spread, Holly and Patrick Wright changed their approach.

“At this point I say, ‘You’re all better and you’re going to start to walk again,’” Holly Wright said.

Two months later, when yet another MRI showed no improvement, the Wrights decided their daughter was done with tests and hospital stays. Payton’s treatment now consists of a strict organic, gluten- and sugar-free diet, therapy and multiple vitamins.

A year in crisis

The family’s ordeal started in the spring of 2006, when Payton began limping and waking up at night crying from a pain in her left leg. In the following weeks, her diagnosis changed several times before doctors agreed on medulloepithelioma.

Treatment required more than five months of hospitalization, and Payton’s parents stayed with her while her grandmother, “Mimi,” moved down from Pennsylvania to take care of Payton’s older sisters, Savanna, 10, and Sydney, 8.

Patrick and Holly Wright’s stay at Duke University’s brain cancer center was tough. Parents there walked around like “zombies,” exhausted from vigils at their children’s bedsides.

“I’m tired. I’m telling you, I’m really tired,” Holly Wright said. “We have a sick child. There’s a million parents like us out there.”

Nighttime is the worst. Payton sleeps with her parents so they can periodically turn her over. Until recently, she was taking as many as 60 pills a day, causing her to vomit in bed at least twice a week.

Hoping for more birthdays

Despite facing many setbacks and bouts of disappointing news, the Wrights continued to believe in their daughter’s potential recovery.

But Thursday’s news changed that. Exactly one year after she was diagnosed with cancer, Payton’s prognosis has now worsened. An ultrasound revealed that Payton’s liver looked like “Swiss cheese,” and only one kidney was functioning.

While some parents measure milestones in their children’s lives by such things as obtaining a driver’s license or getting married, a recent night spent drinking tea and watching television with Payton left Holly Wright feeling as if she had “won the lottery.”

On Payton’s fifth birthday, May 7, Patrick Wright added a small update to the day’s blog post.

“Just a side note … from dad. Last night Payton was sleeping between us as usual. She began to snore just like her dad. I looked over to see her and noticed Holly staring at her. We just looked at each other and said how happy and blessed we were to have her with us. This is one birthday we will not ever forget!”

source : www.heraldtribune.com