Shining on after the darkness of death

by Thomasina Larkin

In July 2005, Kim Forsythe lost her 2-year-old son, Tyler, to acute lymphoblastic leukemia. Even before that time, she had begun to realize how the emotions she was experiencing could be turned into something positive, something that could ease the pain of Tyler’s passing while providing aid and comfort to others going through the same trauma.

“Tyler has helped me find my calling,” Forsythe says, referring to The Tyler Foundation, an NPO which she and her husband created shortly after her son died and whose motto is to “make the fight a little easier and the future much brighter.”

Tyler’s cancer was discovered when he was just 1 month old, and while the following 22 months were undoubtedly some of the most painful of Forsythe’s life, it also opened a new chapter for her. That chapter started with what she calls a “very sweet little series of folk tales.”

Forsythe tells of how she would take precious time away from the hospital to narrate a series of Japanese and English children’s books which have since been published by The Japan Times.

“They had this project and they knew my voice. They really wanted me to do this, so in spite of the fact I was taking out two hours of my hospital time with Tyler, I did it,” Forsythe says.

“Of course, I never told them that I had a sick baby in hospital. And I made sure that I had my husband, my father or my best friend to cover my Tyler shift.

“Every time I’d leave the hospital I was plagued with this guilt of ‘I should be in the hospital with Tyler,’ ” she says. “But once I got to the studio it was actually quite a breath of fresh air because I was able to focus completely on storytelling and so it worked very, very well.”

When The Japan Times publishing department did learn the story of Tyler and the NPO, it decided to donate a portion of the entire series’ ongoing sales to The Tyler Foundation.

A new chapter was starting in Forsythe’s life, and it almost seemed as though her destiny had been preparing her for it for a long time.

She studied engineering in the U.S., but when she came to Japan, she turned her hobby of performing into a career in narration.

“But there was always something between the engineering side of me and the performance side of me that I was never able to bring together,” she says. “With this foundation, somehow, it’s the perfect job for me. I have to deal with people in public and make speeches and presentations and explain why this is important on one hand. On the other hand, it’s running a business.”

The foundation has become a business venture geared toward helping afflicted children directly, aiding their families and funding research. Last year, through events such as celebrity dinners, charity jazz concerts and school charity auctions, the foundation raised ¥35 million, which Forsythe has just started allocating.

“The ideas for the programs are coming from four different sources,” she says. “One is from my medical advisory team of Japanese doctors, one is from the parents who are actually in the hospital now dealing with these things, the third is my personal experience of two years being in the hospital and the fourth is from looking at what’s going on overseas.”

In April, the Tyler Foundation hired clinical psychologist Satomi Funaki to work with parents and children in the cancer ward at the National Center for Child Health and Development in Tokyo’s Setagaya ward. Forsythe says this kind of support is especially important in Japan because children here, unlike in Western countries, are often hospitalized for the entire duration of their treatment.

“It was a little bit of a challenge to implement this because it’s never been done anywhere in Japan,” she says. “It started out very quietly in April. Now it’s been six months and the mothers are seeking her (the psychologist) out saying they really want to talk to her in private. And the kids want to talk to her too.

“Just a few weeks ago something particularly poignant transpired, when one mother, upon the discharge of her child from the hospital, handed a donation to Ms. Funaki for the Tyler Foundation,” Forsythe says. “The mother said she wanted to say ‘thank you’ for the support that Ms. Funaki gave her and her child during treatment.”

Forsythe says that although this may seem natural to someone from the West, coming from a Japanese mom, that small action makes a very strong statement in support of what the foundation aims to do. Forsythe’s goal is to replicate this program in hospitals all over Japan.

Forsythe says that because funding for both domestic and international research projects in children’s cancer has recently been tightened quite a bit, the Japanese Pediatric Leukemia/Lymphoma Study Group contacted her, asking for funds to put into optimizing treatment plans and evaluating the effectiveness of different treatments. That group and Forsythe are also developing a kind of research grant for a team or individual making significant scientific gains in the field.

In addition to striving for the lofty goal of finding cures and new medicine, Forsythe dedicates countless hours to day-to-day activities in the hospital.

“The kids are still in the hospital all day, and it’s just bloody boring. I mean, if you look at these pictures, he’s smiling,” she says as she motions toward a collage on the wall of her Tokyo home, where dozens of photos show her little boy grinning widely.

“For the most part, he and the other kids want to play, they want to be normal.”

One U.S. program Forsythe is trying to introduce in Japan is called Beads of Courage.

“Basically, every time a child with cancer goes through a milestone — it could be a negative or a positive event — either they get an infection, or they have to have surgery or whatever — they get a bead,” she says. “It sounds a bit hard to conceptualize, but it actually paints a picture of their journey, for their caregivers, for their family, for their doctors and for themselves.

“They see that, ‘this is my journey, this is what I’m doing, I’ve come this far , I can go a little bit further and I can do it,’ and they can proudly display their path that they have come along,” she says.

Finally, another important aspect Forsythe considers is the child’s family. She says that for parents who come from prefectures in the countryside, their child falling sick is not just an emotional struggle, but also a financial one.

“Moms have to move to Tokyo, set up an apartment for ¥70,000, ¥80,000, ¥90,000 a month, and some of (the mothers) are 22, 23 years old,” she explains. “Their husband just got out of university and has a new job. It’s a huge financial burden to have to pay for entirely separate living quarters for the next year, or have the family commute by (bullet train) for the weekend.”

So Forsythe is working with organizations like Family House Japan, an NPO that provides accommodation for families outside of the hospital area who need to stay for lengthy periods of time.

But, she says, her ultimate goal is to build a “Shine On House” that could provide inexpensive, long-term accommodation for parents, as well as space for counseling, child care and weekend activities for siblings.

“For a lot of Japanese it’s still a strange concept: ‘Why are you doing this? Your child died from cancer and you want to tell people about it? Isn’t it better to just keep quiet about something like that?’ ” she says.

“Life happens. Good and bad happen. And our goal is to turn around the negative into something positive, and I think that message alone is really important for Japanese people to hear because Tokyo is so busy and a lot of people just don’t have time to think about charity.” * * *

For those who want to get involved, the Tyler Foundation is throwing a celebrity dinner at The Westin hotel in Tokyo on Nov. 8, and hosting “Tokyo Shine On Idol,” a singing contest with celebrity judges, on Nov. 10 in club Dash-G in Takeshiba. For more information about the events or the Tyler Foundation, visit www.tylers