Protons and Prayer: When tumor threatens amputation, Farragut teen becomes pediatric pioneer in Texas


A week after Sabeen Khan of Farragut turned 16, she got what she calls "a huge reality check."

Sabeen was diagnosed with osteogenic sarcoma, a solid cancerous tumor about the size of a softball that was in her pelvic bone.

"I'm a clutso. I thought I had just pulled a muscle or something," Sabeen said of the pain she experienced for months before the January 2006 diagnosis. "But when the limping wouldn't go away, I got an MRI done."

Because of the rare location of Sabeen's tumor, surgery meant the amputation of her left leg, all the way to her hip, as well as part of her pelvis and part of her sacrum, the lower part of her backbone.

"There was not a guarantee you could get the whole thing out," said Dr. Ray C. Pais, director of pediatric oncology at Children's. Still, Sabeen's chances of survival would have increased from zero to about 40 percent.

Sabeen was faced with the biggest decision of her young life: quality of life or quantity?

But for Sabeen and her parents - Mujeeb, a geriatric psychiatrist, and Zeb, a stay-at-home mom to Sabeen and her two younger sisters - there wasn't any question. They decided against the amputation.

"The surgery would have been so radical, so mutilating, that we didn't struggle (with the decision) at all," Mujeeb Khan said. "You have to have faith in God."

Sabeen put on a brave face.

"I figured moping around won't change it, so I might as well get over it and deal with it," she said. "This made me realize how much I am taking for granted and how I need to step it up: I need to pray. I need to get out of all the pointless goals I have and do something meaningful."

Sabeen also took her diagnosis as an opportunity to be an example.

"I'm a Muslim, and with the way people portray us, I wanted to show that I'm normal," she said.

"That I'm a good person and that Muslim people are good."

"So uplifting" to the family was the response from the community, from the neighbors, from Sabeen's school from people the Khans didn't even know.

"We heard they were saying prayers and rosaries in the churches," Mujeeb Khan said. "From different faiths, from different parts of the world - anyone who knew (about Sabeen) was praying, and that helped her significantly."

An answer in Texas Family friend Sadia Amer was searching the Internet for alternative treatments when she found information about the University of Texas M.D. Anderson Cancer Center in Houston, which had just opened its Proton Therapy Center in April.

In August Sabeen became the Proton Therapy Center's first pediatric patient.

"It really was a miracle," Sabeen said. "Oh my goodness, I am so blessed to have the option of trying something new that so many people don't even know exists."

In traditional radiation therapy, X-ray beams, also called photons, go through the body and affect everything in their path, according to a Proton Therapy Center brochure. Physicians must limit the radiation dose delivered to the tumor to minimize the damage to surrounding healthy tissue.

Protons, however, allow physicians to direct highly targeted radiation to match the shape of a tumor while sparing nearby healthy tissue. This makes protons the preferred form of radiation therapy for children, whose growing bodies are extremely sensitive to the effects of radiation.

For Sabeen, proton therapy required her to lie perfectly still for 30 minutes a day, five days a week, for seven weeks of treatment. She had no pain from the treatment, only something similar to "a bad sunburn," she said.

When Sabeen returned home to Farragut, the pain in her hip became so great that she was in intensive care at Children's four times in December. Her family scheduled another trip to M.D. Anderson, where, on Dec. 20, they were given the news:

The tumor is inactive.

"I asked my dad after (the doctor) went out to get the scans, 'So does that mean it's dead?' " Sabeen remembered. "It took me so long for it to sink in."

"It was nothing short of a miracle," Mujeeb Khan said.

The pain, it turns out, was a sign that the tumor was dying.

And the future Dr. Peter Anderson, the consulting oncologist at M.D. Anderson, said he had "cautious optimism for a bad tumor in a bad place," but that he also expected results.

"Radiation, contrary to dogma, is effective (in treating osteosarcoma). We have known that since the '90s," he said. "It has worked, and as long as the scans stay this way, we have a good chance of beating it."

That doesn't mean that Sabeen is cured. She will continue to undergo chemotherapy, both orally and through IV at Children's, for four more months, and she must have regular scans to see if the cancer has spread, as four out of five cases recur in the lungs, Anderson said.

She will go back to M.D. Anderson for a check-up in May.

"There is still a decent chance the cancer could come back, but at least now we are talking about the possibility that she could be cured," Pais of Children's said.

As Sabeen approaches her 17th birthday Jan. 21, she continues to have pain but is using a patient-controlled access pump to deliver a continuous infusion of pain medication into an IV in her arm. She is hoping, though, to be able to finish her junior year at Farragut High School with a full load of classes this semester.

"I think, ultimately, you start enjoying the moment more," Mujeeb Khan said. "The small things in life that you took for granted mean so much more now."

"Like school," Sabeen interrupted, laughing. "I miss school. Now I love going to school."

And that, for a 16-year-old, is a real reality check.

Lesli Bales-Sherrod may be reached at 865-342-6369.

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