Thursday, January 11, 2007

Kabir is a kid who Dr. Shad was treating at Georgetown. The Hope for Henry Foundation gave him the Harry Potter books and Disney videos. I also loaded up for him a video iPod with some Disney movies and Harry Potter audio books. I hope he is using that on his flight back to India.

I have a lot of pictures of him. I will put some up on here.

This is a very sad story.

Teen Leaves 'His Only Hope' Behind in U.S.

After 20 Months, 14-Year-Old With Leukemia Returns Home, Saying No More Chemotherapy or Bone Marrow Transplants

By Susan Levine
Washington Post Staff Writer
Thursday, January 11, 2007; B01

They had spent a tiring weekend boxing up his Harry Potter books, his Disney videos, the games that had helped sustain 14-year-old Kabir Sekhri in this foreign land. And as his mother and father checked off their final packing details, so did Kabir's doctor. Her list included sterile dressing kits and needles, gamma globulin and antibiotics, methadone for pain -- enough to last him until spring, she had decided.

If only she could guarantee that his cancer would allow him that much time.

These were not the preparations anyone had envisioned when Kabir and his parents, Vikram and Sonia Sekhri, came to Washington from New Delhi almost 20 months ago. They had hoped for a triumphant return to India, a declaration of victory marked by the full recovery of Kabir's health, animated smile and thick, dark hair.

Instead, when the family arrived at Dulles International Airport late Tuesday afternoon, a frail-looking Kabir rode in a wheelchair. A navy knit cap concealed the damage wrought by chemotherapy. His leukemia had kept coming back with more and more vengeance until he unequivocally declared that he was done.

It was a wrenching decision, not only for his parents but for his oncologist, Aziza Shad, who had led his care at Georgetown University Hospital. Yet it was a decision they all felt compelled to honor.

The victory now was simply that he was there at the airport, stable enough medically to endure two long flights halfway around the world. Shad bent low to ask Kabir how he was feeling. She would be traveling the more than 9,000 miles with him.

"I made a promise I would get him home, and I need to stick to my promise," she said.

The journey on which they had embarked was not all that different from the journey many families take. Still, something about Kabir's gentle, uncomplaining manner and his extraordinary distance from home prompted the hospital staff and other patients and parents to embrace him in a singular way. The Sekhris reciprocated. And somehow, despite all the heartache, his mother found blessings. "God's been very kind," she'd say.

Kabir was 11 when he first became ill, and the doctors initially attributed his aches, fatigue and swollen lymph nodes to an infection. When his symptoms didn't respond to the usual medicine, they looked further. The correct diagnosis -- of T-cell acute lymphoblastic leukemia -- came the same week that Kabir's grandfather succumbed to throat cancer after years of grueling treatment. "That was a tender moment for us because we had seen all the treatment fail," Kabir's father recalled. "We thought, 'How can a child go through this?' "

The Sekhris quickly learned. Kabir's particular disease assaults children more than adults, especially older boys, and it carries a poorer prognosis than other pediatric cancers. Though his body responded well enough to the early chemotherapy to put him in remission, he had not completed the full regimen when he relapsed.

"If you really want to do something for him, take him to America," their oncologist in India advised. The newest drugs were available in the United States, as were the best centers for the bone marrow transplant that probably would be needed to save his life. As his mother remembers, "We were told this was his only hope."

They boarded a plane in May 2005, leaving behind Vikram's leather goods business and everything Kabir knew: his beloved sister and the aunts, uncles and cousins who make up the Sekhris' close-knit extended family, the friends he had played with his entire childhood, the dusty, teeming city of Delhi. A relative in Falls Church had contacted Shad, head of the pediatric oncology division at Georgetown's Lombardi Cancer Center. Would she evaluate his case? Did she think he had a chance?

Yes, she did.

Four months of highly aggressive chemotherapy drugs ravaged Kabir but pushed his body into a second remission that made him a candidate for a bone marrow transplant. The perfect donor: his 16-year-old sister, Ridhima. She flew from India, and the family traveled to Duke University Medical Center for the procedure. The graft took well enough that when Kabir returned to Washington in early 2006, he was out of the hospital far more than in it, giving him a chance at memories not integrally tied to pain.

He went to New York, visiting the Statue of Liberty and gawking at Times Square. He also became an enthusiastic camper at a National Institutes of Health program for children battling cancer, canoeing and riding horses and even trying fencing.

"I want to come back from India every year for this camp!" he exclaimed upon his return.

The Sekhris started counting the days to the first anniversary of Kabir's transplant. By September, it seemed likely that they would make it, which would mean that Kabir would be able to be fly to India in time for a cousin's wedding celebration. He'd already bought new clothes.

He never wore them, however. The one-year checkup at Duke revealed a second relapse. The news was shattering. "Everything came to a standstill," his father said. In an instant, wedding travel became impossible, as did his son's greatest hope: to tell everyone back home that he at last was well.

Kabir was readmitted to Georgetown, and the weeks that followed deteriorated in a horrific downward spiral. He rejected any talk of another transplant but acquiesced to Shad's entreaties for one final attempt at chemo. She tried different toxins and combinations as her patient grew ever weaker, wracked by days of extreme fevers, numbness and bleeding. He stopped eating and virtually stopped communicating. When he did talk, he'd say plaintively, in a wispy voice made almost childlike by the drugs: "I just want to go home." Shad feared he'd never leave the hospital.

But just after Christmas, after the final drug in Western medicine's arsenal, a bone marrow biopsy showed the unexpected -- a partial remission. No matter, Kabir reminded her; he'd said he was finished. But Shad, who has a son just one year younger, still is struggling with that. "All I know is that this child gave it his best," she reflected late last week. "He gave it again and again and again and again."

On the afternoon of his departure, the staff at the Lombardi Center threw the Sekhris a cake-and-tears send-off. Then the family and Shad headed to Dulles. Kabir might have wished he'd seen more of America. "I would have liked to have gone to Disney World," he admitted. Not this trip.

His small entourage proceeded to a secluded alcove of an airport lounge. Kabir snacked on french fries, glimpsed at long last the swirling white magic of a brief snow shower and fell asleep under the handmade quilt given to him at the hospital.

"It's time," his mother quietly roused him. The teenager sat up in an instant and readjusted his navy knit cap. And as his parents followed close behind, an attendant wheeled him the final distance down the corridor to gate 32, through the last checkpoint and onto the plane.

He never looked back.

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