Sept. 21, 2003: 7-year-old's struggle gives inspiration to U.Va. assistant football coach Mike London

Daily Press

There are no visible scars. A nearly hairless head that's usually covered by a floppy denim hat and the surgical mask she wears in crowds are the only signs that something may be different.

Nothing in Ticynn London's behavior indicates she is anything other than a normal 7-year-old who dotes on her baby sister, forgets to clean her room and sings along to Sesame Street.

You wouldn't know that she was born with a rare genetic disorder that slowly ate away her immune system and likely would have killed her, that she endured chemotherapy and radiation treatments preceding a life-saving bone marrow transplant last spring.

You wouldn't know that she responded to the transplant as if the very breath of life had touched her, that she recovered so quickly she was allowed to return home a full month before the prescribed release date.

You wouldn't know that a small child who suffered with the most pedestrian of illnesses could teach the grown-ups around her about courage.

You wouldn't know that her father, the University of Virginia assistant football coach who has spent most of his adult life around the fittest and strongest young men, looks at his 4-foot, 66-pound daughter with a combination of love and awe so overwhelming that it sometimes brings tears to his eyes.

"She's my inspiration," Mike London said. "That's the gospel truth."

* * *

Mike and Regina London decided that if their first child was a boy, they were going to name him Tyson. They hadn't picked out a girl's name, but a friend of Regina's suggested that they didn't have to change the name, only the spelling.

Mike London, a former Bethel High and University of Richmond standout player, was working as an assistant coach at Richmond at the time, his second stint with the Spiders sandwiched around a three-year gig at William and Mary.

Regina London, a Newport News native who worked at a local bank at the time, felt fine during her pregnancy. Her unborn child, however, wasn't gaining weight. Doctors prescribed bed rest and oxygen for Regina, simply to give the baby the best possible environment for growth.

Despite the measures, doctors delivered Ticynn London five weeks early, on Nov. 9, 1995, believing she would do better outside the womb. She weighed just 4 pounds, 12 ounces. Curiously, her left thumb was simply a fold of skin and did not have a bone.

One year later, Mike and Regina and Ticynn headed north to Massachusetts, where he had gotten a job with new Boston College head coach Tom O'Brien, a longtime University of Virginia assistant. The combination of a major college football program and the superior medical facilities in the Boston area were too attractive to pass up.

Ticynn grew and progressed, if a little slowly. She bruised easily and had small patches of slightly discolored skin, what doctors refer to as cafe au lait spots. Colds and other childhood illnesses lingered longer than normal. When she was 2, doctors performed surgery to move her index finger over to act as a thumb-like, opposing digit.

The Londons suspected that their daughter had some kind of chronic condition, but doctors were unable to pinpoint it.

In January 2000, at age 4, Ticynn caught a cold that she couldn't shake. Regina London took her to doctors and the local hospital, Newton Wellesley, several times. Doctors discovered that several of her blood counts were low. There were whispers of leukemia, she said.

Ticynn was transferred to Children's Hospital in Boston. Within 90 minutes, Regina began hearing the term that would forever change her daughter and family.

* * *

Fanconi anemia is a rare genetic disorder often characterized by bone marrow deficiencies. Dr. Gary Kupfer, a pediatric oncologist and hematologist at the University of Virginia Medical Center and Ticynn's physician, estimated that there are between 500 and 1,000 cases nationwide and several thousand worldwide.

Changes in skin pigmentation and abnormalities in the upper limbs, such as missing or misshapen thumbs, are classic indicators. Because the disease is so rare, however, it can easily go undiagnosed. When she was diagnosed, Ticynn's blood counts were low, but not alarming.

Victims of the disease produce fewer red blood cells, which transport oxygen through the bloodstream; fewer white blood cells, which destroy bacteria and produce antibodies; and fewer platelets, which help in clotting.

The blood counts decline over time, weakening the immune system. Victims eventually are susceptible to leukemia and other forms of cancer. Undiagnosed victims often do not live past their teens.

A bone marrow transplant is the only hope of combating the disease, though finding a compatible donor is no small feat. A child's DNA typically is made up of a combination of that of the mother and father, often eliminating both parents as donors.

Kupfer said there is only a 1-in-5 chance of a match between siblings. None of Ticynn's sisters or brother was a match. Given that African-Americans make up just 12 percent of the population, the potential donor pool is automatically limited.

But the Londons caught a break. Tests revealed that Mike's DNA was close enough to donate bone marrow to his daughter.

Kupfer said that Mike "wasn't a 100 percent perfect match, but he was better than what we would have had, had we looked for an unrelated donor."

The Londons spent four years at Boston College. They were prepared to remain in Boston, for Mike's job and Ticynn's treatment, when Al Groh got the Virginia job and asked London to join his staff in 2001.

The Londons wanted to return to Virginia, but agreed only after they were satisfied that Ticynn could receive adequate care in Charlottesville.

With those assurances, they moved back. Kupfer, who has treated Ticynn since they returned, and the Londons agreed that she should undergo the bone marrow transplant while she was healthy. They settled on late April and began making arrangements before last Christmas.

"We knew the day would come when she'd have to undergo the procedure," Regina London said. "We wanted to do it when she was well and we could make the choice, rather than have to deal with a lot of other complications if we waited until she was really sick."

* * *

Ticynn London checked into Johns Hopkins in Baltimore last April 22. The plan was for her to undergo four days of chemotherapy treatments and one day of radiation treatment to shut down her faulty immune system. On April 29, she would have the bone marrow transplant.

She would spend several weeks in the hospital, then several more in a downtown hotel where she could be closely monitored. Total time in Baltimore was projected to be 100 days.

The Londons chose late April because it was the least inconvenient time frame for everyone. It was close to the end of the school year for Ticynn. Mike had finished with spring football at U.Va. Regina would stay with Ticynn in Baltimore, while the other three children would stay with Regina's parents and family in Newport News until they returned home in July.

Mike burned up the highways between the Peninsula, Charlottesville and Baltimore. He swapped recruiting areas with other coaches, arranging to see prospects and high school coaches in Maryland when he visited Ticynn and Regina.

"We were very fortunate to be able to plan this out," Regina said. "A lot of other people I saw would go into the hospital one day, get diagnosed and admitted, and they were there for five or six months without any advance notice. If it had happened that way for us, I don't know what we would have done."

Mike and Regina didn't know how Ticynn would react. As it turned out, they were far more apprehensive than their daughter.

"It's amazing what a child can teach you about toughness and resilience," Mike London said. "She's undergoing chemotherapy and has an IV coming out of her and we're agonizing about putting her through this and she's saying, 'Go ahead, Dad, put the stuff in there. It's OK.'"

When Ticynn's hair began to fall out after a couple of chemotherapy sessions, she matter-of-factly told her teary-eyed mother, "Let's shave it off." After a nurse shaved her head, Ticynn walked to the mirror, took a look, and went back to watching TV.

Though visibly tired and weak, she still moved easily through the hospital corridors and among the staff.

"I don't know where she got her strength," Regina London said. "There wasn't a day when she didn't get up and get out of bed and smile and walk around."

The bone marrow transplant provided Ticynn with an immediate jolt. Within days, her blood counts began to regenerate toward normal. She returned to her usual, bouncy self.

She spent a month at Johns Hopkins, then she and Regina moved to a downtown Baltimore hotel suite donated to patients and their families who are undergoing extensive treatment.

She progressed so rapidly that the doctors at Hopkins gave her the go-ahead to return to Charlottesville after 64 days, more than a month before the original prognosis.

The Londons refer to April 29 as Ticynn's "New Life Birthday."

* * *

Ticynn London is not cured. Because her immune system is still regenerating, she is susceptible to disease and infection that the average person easily fends off.

That's why she must visit Kupfer every two weeks at the University of Virginia Medical Center, where her blood counts and vital signs are closely checked. That's why she wears a surgical mask at the hospital and in crowds. That's why she did not return to school this fall and has a home tutor.

Doctor visits figure to become less frequent in the coming months. The Londons plan for Ticynn to return to school after the first of the year. Her hair has begun to grow back.

Though the bone marrow transplant appears to have taken care of Ticynn's low blood counts, she still must undergo regular exams for signs of other cancers. Older Fanconi anemia patients may develop head and neck, esophogeal or gastrointestinal cancers.

"I hope and pray that she does well," Regina London said. "If anything else happens, we'll handle it."

All of the Londons are stronger and more resilient than they knew.

"It's been a good experience for a bad experience, I'll say that," Regina London said with a resigned chuckle. "I feel like it's worthwhile to talk about because somebody else might be going through the same things we did."

Mike London views his life and priorities differently. He still works just as hard and is just as focused as always.

But a few minutes snuggling with Ticynn, who is quite literally his blood, have a way of shrinking the pressure, the ambition, the wins and losses, the fatigue and frustration.

"Sometimes, you can get caught up in your own life and trying to get ahead, and then something like this causes you to step back," he said. "After a while you realize if you're at a place where you're making significant contributions to other people's lives, really that's all that matters."

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