A new room for Sahara

Within a month the Aldridge family's Cape Girardeau home will be a busy place, full of the sounds of hammers, saws, drills and workers. The home's family room will be transformed to meet the specifications of 12-year-old Sahara, a girl who's caught up in a life-or-death struggle with pontine glioma, a highly malignant brain-stem cancer.

The work shouldn't bother Sahara. It's exactly what she wants to happen.

The Make-A-Wish Foundation exists to fulfill the wishes of children like Sahara who have life-threatening illnesses. Most of the time the children wish to meet celebrities or go somewhere, like Disney World. But not Sahara. The young girl has instead chosen a wish that will benefit her and her family for years to come -- a modern, stylish family room, the room where she spends most of her time with father Shannon and mother Amy.

"This is one of those really wonderful and unique wishes we work on for our kids," said Heather Fann, director of development with the Make-A-Wish Foundation of Missouri's Springfield chapter, which serves 99 counties, including Cape Girardeau County. "They can go anywhere ... they can meet anyone, but Sahara wanted a new family room."

Shannon Aldridge said the Make-A-Wish personnel who interviewed her about her wish were surprised. "They couldn't believe a child wanted a room makeover," Shannon said.

But since December the Aldridge home, and especially the family room, has become Sahara's world. Her interaction with the outside world is limited, and just about the only people in her reality are her parents.

In December, just before the benefit concert by Rick Springfield in Sahara's honor at the Show Me Center, the Aldridge family received bad news. The chemotherapy and radiation treatments Sahara had been receiving for months at Houston's MD Anderson Cancer Center weren't working. The doctors suggested more chemo, more radiation, and warned of some adverse side effects. Sahara could develop chemical burns on her body, her immune system would be wrecked, heart and liver problems could develop and the prognosis for stopping the cancer was still not good.

"They scared us so bad by telling us the side effects of the treatment," said Shannon Aldridge.

So Sahara's parents decided to pursue plan B.

"You know you've got to do something, and you know you've got to do it quick," Amy Aldridge said. "Mainstream doctors are not going to suggest anything but chemo and radiation. In Sahara's case, we saw it wouldn't work."

Readers of Sahara's blog followed the family's experience during this turbulent time.

"Plan B is now in full swing, and once again we are Houston-bound. Paperwork has been submitted, medical records have been transferred, and on Monday at 8:30 a.m., Sahara will become a new patient at the Burzynski Institute. By the grace of God, Monday marks the exact day that enough time will have passed, post-chemo and post-radiation, in order for her to begin the new treatment," Amy wrote in her blog Dec. 7, a day before the concert.

The Burzynski Research Institute in Houston presented the Aldridge family with an alternative to traditional cancer treatment. Founded by Polish doctor Stanislaw Burzynski in 1983, the institute labels itself a bio-research firm. To treat cancer, the institute uses gene therapy through chemicals called antineoplastons in FDA-approved clinical trials. The antineoplastons basically make the cancer turn on itself. Sahara is now a part of one of those trials.

Side effects minimal

Twenty-four hours a day the antineoplastons are pumped into Sahara's system through a port in her chest. The fluids and the port prevent Sahara from leaving the house, except for physical therapy at Saint Francis Medical Center, and have turned Amy into a full-time nurse of sorts.

The side effects are minimal, and the family hopes the payoff will be huge. So far they say no growth has been seen in the tumor.

Before starting the experimental Burzynski treatments, Amy conducted hours of research on cutting-edge and traditional cancer treatment options. She said she knows some may call Burzynski a "quack doctor," but she's confident in the institute's work, more confident than she is of the chemotherapy and radiation treatments Sahara received.

Amy and Shannon appreciate the work MD Anderson did for Sahara. But they just weren't getting the results the Aldridges needed. Now they are, Amy said.

"Once we started this treatment, her tumor stopped growing," she said. Sahara has a glioblastoma, one of the fastest-growing types of cancer. Tumors can double in size in the course of weeks.

Not everyone shares the Aldridge family's enthusiasm for Burzynski's methods, and the family knows that. The Aldridge family says pictures of Burzynski's success stories are hanging on walls all over the institute, including a Cape Girardeau girl who was cured of brain cancer by the experimental treatment.

They've also seen the criticisms. Burzynski's critics have said the doctor can't provide documented proof of his successes, that any success stories rely on anecdotal evidence or could be attributed to the phenomenon known as "spontaneous remission."

The family has gained hope from the treatments, though.

Family friend Jennifer Hecht has seen the family's outlook brighten. Hecht was Sahara's sixth-grade teacher last school year. When Sahara was diagnosed with cancer nine months ago, Hecht's bond with the Aldridges grew as she provided support for Sahara and her parents. Hecht was one of the co-organizers of a benefit concert in Sahara's honor last year at Capaha Park.

"I think that, with the outlook the children's hospital gave them, there was no hope at all," Hecht said. "With the treatment she's in right now, she's making progress and getting strong, and I really think it's working."

One major difference in the current treatment is that Sahara gets to stay at home, instead of spending much of her time at a Houston hospital. Much of that time is spent in the family room the Make-A-Wish Foundation will make over.

Within the next few months the Aldridge family should know for sure whether plan B will work as they hope. If MRIs over the next few months continue to show no tumor growth, the Aldridges said it's an indication the Burzynski treatments will work.

msanders@semissourian.com

335-6611, extension 182