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Saturday, Sept. 2, 2006
Tyler Foundation helps other sick kids shine on
By ANGELA JEFFS
There are many pictures of Tyler Ferris on the Web site his mother, Kimberly Forsythe, created after his death just over a year ago. In every one he is smiling, if not grinning from ear to ear.
"He was the happiest child imaginable. That's why we can be proactive about his short life. Because he made the best of it, so can we," says Kimberly between shifts at NHK in Tokyo's Shibuya, where she reads the evening news in English.
Kimberly explains that she came to Japan 16 years ago to take a hiatus from postgraduate studies and to visit her father, who was setting up a join venture with Sumitomo Metals. Her stay became indefinite after meeting her husband, Mark, a busy lawyer-turned-entrepreneur originally from Zimbabwe who is working in venture capital.
Daughter Natalie came along, then when she was 3, Tyler was born July 7, 2003.
Tyler was just 1 month old when his parents took him for a checkup and voiced concern that he was sleeping so much, and didn't he look a little pale? Referred to a hospital for a blood test, the doctor there took one look and said, "He has some kind of tumor."
In fact, Tyler had leukemia, and as bad as you can get. Changing his blood put him into a semistable state, enabling him to be transferred to the National Center for Child Health and Development. "Having gone through three critical days, with Tyler surviving dialysis and breathing on a respirator, and knowing that Japan has one of the highest recovery rates of infant leukemia in the world, we decided to put our faith in Dr. Kumagai and his staff." Together they had to come to terms with Tyler being in the hospital for at least a year.
"Though he went into remission, we were told that we had to do a bone marrow transplant within three months. "
His sister, the most likely candidate, was not a match. There was no matched donor in the Japanese bone marrow date base. Nor was there time to search overseas.
From then on it was a fight to keep Tyler in balance, constantly adjusting medication and treatment. He survived septicemia twice, despite a 50-50 chance of survival.
Eight months after the transplant in autumn 2004, he relapsed. By early 2005, Tyler's cancer was in remission, but one of the doctors on his team put Kim and Mark straight. "Taking my hands in her own, she told us that our son would relapse again. She said, 'Though really there is nothing we can do, right now he is fine, and the next few months will be very special for you all.' "
From that point on, the family's attitude was simply to enjoy the time they had with Tyler, and for four months he frequently came home every week for a few nights.
"He was such a happy baby," recalls Kimberly, "happier than his sister, happier than healthy kids walking around. If he'd been suffering on a day-to-day basis, we would have let him go, but he was toddling chasing the cat. You can't give up on a kid who is not done yet."
By the end of April 2005, a test showed Tyler had relapsed and the leukemia was in his blood. Following complications he died June 17, 2005.
Tyler's memorial service was quiet and private, held at home. "Afterwards we all had a few drinks!"
The next thing she knew, her husband was talking about a memorial cricket match at The Yokohama Country and Athletic Club: "We'll give the money to the hospital, or something . . ."
But as Kimberly and Mark talked, it became clear that what they needed to do was to help people like themselves, mothers, parents, families, kids. So the a nonprofit organization, The Tyler Foundation for Childhood Cancer, was established with Kim as president and representative director and Mark as vice president and director.
The aim of the foundation is fourfold. First is to pay for an extra oncologist. At St. Jude's in the States, 120 doctors and researchers care for 300 child cancer patients a year. NCCHD has three full-time doctors doing everything.
"Also provide computer access. If you are stuck at hospital all day, it helps to surf, play games, mail friends."
There is a huge need for counseling. "Doctors and nurses are busy. You can talk with other parents, but with everyone is dealing with their own ups and downs; the sense of isolation can be overwhelming."
Another practical problem is how to keep patients' siblings occupied over weekends at hospitals when parents are preoccupied at bedsides. "We need a rota of volunteers for a child-minding service. We have access to many companies that are keen to help. It would be such a weights off mums' shoulders."
In addition, The Tyler Foundation hopes to fund tests and drugs not provided by national insurance, and has begun a bone marrow campaign. "If we'd had the time to find a better match, maybe things would have been different for Tyler."
Three events are arranged as a sports extravaganza over three days in late September. The foundation is bringing in more than 10 rugby and cricket celebrities from around the world for the festivities.
Friday, Sept. 29 kicks off the events with a celebrity sports dinner at the Grand Hyatt Hotel. The next day is Celebrity Golf Day. Sunday is the cricket match, with an auction to play alongside famed players. "We aim to raise 10 million yen, which will surely make Tyler smile."
Kim says her son helped her so much, in ways she is only just begin to understand or explain. "I find myself constantly checking myself, asking what's really important today, to cut the crap. "
She believes his life and death must be made sense of, made worthwhile. Simply put by Dr. Kumagai: "If quality of life is measured by the joy brought to others, Tyler lived a very good life."
Look at the Web site, she adds. It's all there. And he is.