Posted on Mon, Jun. 03, 2002

Kaitlyn's network


By Linda Goldston

Mercury News

Kaitlyn wanted to know two things.

``Who won `Survivor'?''

``When can I go home?''

The questions were mouthed word by painful word as the 8-year-old girl struggled to make her mother understand. The questions came between tears, between tests of her lungs, between insertions of still more intravenous lines to draw blood. The questions made her mother want to laugh and cry at the same time.

``She's having a really sad day today,'' Kerry Langstaff said. ``She's scared, and she wants to go home.''

Kaitlyn has a rare disease so serious her doctors at Childrens Hospital Los Angeles feared she would die. The illness struck like lightning, upending the lives of a Saratoga family already suffering from Silicon Valley's recession.

Ever since last summer, when both parents were laid off from their marketing jobs -- Kerry from 3Com, Bradshaw from a start-up -- the Langstaffs have struggled to hold on to their ``good life.'' The nice house. Two bright, healthy daughters. Loyal friends. Enough school, sports and community activities to fill up most of their afternoons and evenings, certainly all of their weekends.

What happened in April humbled them.

Success no longer means saving their house or finding new jobs. Success means helping Kaitlyn. And they quickly learned that they would need the help of friends and family, former co-workers, neighbors and strangers to achieve that.

Since April 5, Kaitlyn has been battling a rare condition called toxic epidermal necrolysis, a severe form of Stevens-Johnson Syndrome. She was airlifted from a hospital in Madera to one in Los Angeles and, last week, to Lucile Packard Children's Hospital at Stanford. She faces many months of intensive care and rehabilitation.

On Friday, Kaitlyn ate her first meal in two months that didn't come through a tube: a few sips of chicken soup.

It made her smile.

Toxic epidermal necrolysis is most often caused by an extreme allergic reaction to common medications, including antibiotics and painkillers. It rapidly assaults the skin and mucous membranes as the immune system attacks the body inside and out, forming lesions and blisters that resemble second-degree burns.

``This disease just attacks every part of your body,'' Kerry Langstaff said. ``Your skin, eyes, lungs.''

No reliable statistics are available, but some studies cite death rates as high as 70 percent for children. Some people lose their sight or have long-term lung and vision problems. Some recover fully. Kaitlyn could get better or she could get worse.

After nearly a year without income and the specter of losing their house, the Langstaffs were just starting to plan their future with confidence again when Kaitlyn became ill. Langstaff had landed a job at Nuance Communications; her husband was going to interviews.

They planned to celebrate the return of their good fortune with a camping trip to Yosemite. At a stopover in Fresno, the creative competition team Mrs. Langstaff coached was to be in the state finals. Their 11-year-old daughter, Kelly, a sixth-grader, is on the team.

The Langstaffs left on April 5. Kaitlyn didn't want to eat dinner that night and showed signs of the flu.

She was treated at an urgent care clinic the next morning. By Sunday, she had a severe rash and a high fever.

On April 8, the Monday they planned to drive to Yosemite, Kaitlyn was admitted to Valley Children's Hospital in Madera.

On April 15, the day Mrs. Langstaff was to start her new job, Kaitlyn was airlifted to Childrens Hospital Los Angeles because it appeared she might need a heart-lung machine.

``It came on us out of the blue,'' Brad Langstaff said. ``First it's OK, she's sick. Now we're in the emergency room. Now we're being admitted. Now she's going to the ICU. Now she's being intubated. Now we're being airlifted to Los Angeles. We've got it figured out: There is no planning now.''

The family that had its days planned to the minute was now forced to wait, hour by hour, checking Palm Pilots to see what day it was, not which appointment came next.

The couple was at Kaitlyn's side at least 15 hours a day, crashing for a few hours at Ronald McDonald House, just around the corner.

The Langstaffs celebrated Mother's Day and their 15th wedding anniversary at the Los Angeles hospital.

Outside Kaitlyn's room in the pediatrics intensive care unit in Los Angeles, a wall of plaques of thanks from the families of children who lived and memorials to children who died was a daily reminder that fate can swing either way.

The Langstaffs spent 44 days in Los Angeles focused on Kaitlyn, a vigil made possible only by a support network that formed immediately.

``They needed someone to pick up Kelly from school, to water the plants, all sorts of practical things that you can't just write a check for even if they had the money,'' said Bridget McNeil, Kerry Langstaff's former boss at 3Com. ``In Silicon Valley, with our self-sufficient lives, we kind of build little walls around ourselves. Their walls are all stripped now. They couldn't just work harder and be smarter. That wasn't going to work this time.''

Help came from many sources, from the ribboned hearts with Kaitlyn's initials sold at Campbell Bobby Sox softball games to the donations of money from strangers and friends of friends.

Karon and Mark Pasos, the Langstaffs' neighbors in Saratoga, watched their house and fed Kaitlyn's Christmas kitten, Kali. Susan Harvell, whose daughter played volleyball with Kelly at Rolling Hills Middle School, organized a tax-deductible fund for Kaitlyn. Mothers of Kaitlyn's best friends made trips to Los Angeles so the Langstaffs could leave the hospital for a nap or a meal.

Kaitlyn's teacher, Carol Curry, and her second-grade classmates at Forest Hill Elementary School planted a large flower garden, ``Kaitlyn's Garden,'' outside their classroom window. David May, one of Kelly's former teachers, organized weekly ``Cookies for Kaitlyn Day'' and a carwash to raise money. The seventh- and eighth-graders at Kelly's school held a dance and donated the proceeds.

Members of a Brownie troop from Marshall Lane School in Campbell donated their monthly dues: $10.

Tammy Davies, whose son, Jeremy, has gone to school with Kelly since preschool, went to stay with Kaitlyn at the hospital in Madera on April 15 so Brad Langstaff could rush home and pick up things they needed -- and watch part of Kelly's softball game so she wouldn't feel abandoned.

Davies planned to spend one night; she stayed a week.

``Kerry and Brad give so much to the community, the schools, their friends and neighbors. They don't do it for a pat on the back or any recognition,'' Davies said.

In big and small ways, the family has touched many lives.

After the shows for San Jose Children's Musical Theater, where the Langstaffs and Davies volunteer, ``the kids come out in costume to `meet and greet' the audience. Kerry would always find the littlest kids and ask them for their autograph. She loved to see how thrilled and excited the kids were when she asked,'' Davies said.

Young or old, friend or word-of-mouth acquaintance, the members of Kaitlyn's network were linked by daily e-mail updates.

``We have been absolutely overwhelmed by the outpouring of love and support from all of you from across the country,'' Kerry Langstaff wrote on April 14 to the growing list of Kaitlyn well-wishers.

Two weeks later: ``Many of you have asked us to give Kaitlyn a hug and boy do we wish we could do that! Right now we can only rub her feet -- actually only the bottom of her feet because there are IVs on the top -- touch the fingers of one hand and kiss her head. That is it.''

On May 2, Kerry Langstaff was allowed to hold her daughter for 45 minutes. It took 30 minutes to maneuver all the tubes and wires so she could lie down beside her.

``She was pretty asleep during most of the time, but I hope she could sense my presence,'' Kerry wrote in the e-mail. ``I finally got to give her a hug for all of you.''

The focus of all these efforts, all the prayers for one child to survive, is Kaitlyn Sierra Langstaff, a precocious second-grader who wants to be a veterinarian when she grows up.

If she could have them in the hospital, she would be comforted by her goldfish, Sushi, her kitten, Kali, and the family dog, Maddy.

Kaitlyn inherited her mother's knack for organization and stuck her own to-do list on the refrigerator. For her eighth birthday party in February, she typed a list of whom she wanted to attend, what games she wanted to play, what food she wanted to eat.

After her homework was done, she would message friends and play games on the computer. She loves math, writing stories and watching ``SpongeBob SquarePants'' cartoons.

She adores her older sister. When Kelly visited her in Los Angeles, Kaitlyn wanted to hear what the big kids -- Kelly's friends -- were up to before hearing any news about her own friends.

Kaitlyn had talked about attending a volleyball camp at Stanford this summer. She wanted to improve because Kelly is a good player. She wanted to be better than her big sister.

She wanted to get an Apple iBook computer. Kelly got one for Christmas.

It was during Kelly's visits to see Kaitlyn that her little sister first began communicating again, nodding her head yes and no, raising her arm to wave.

``My mom asked, `Why do you think this happened to Kaitlyn? Chances are one in a million.' '' Kelly said. ``I said, `She's special. If she's special enough to get it, she's special enough to live through it.' ''