SJ Mercury 11/28/02

Posted on Wed, Nov. 27, 2002

Kaitlyn's courage

By Linda Goldston

Mercury News

In her dreams, Kaitlyn Langstaff is "normal.'.'

She can see, plays softball and soccer with her friends and eats her favorite foods: cheeseburgers, pizza and nachos. No oxygen or feeding tubes stick out of her body.

Her mother, Kerry, dreams of hearing her 8-year-old daughter suddenly say "Mommy...'' Kaitlyn doesn't have to mouth the word or use an electronic larynx to speak.

Seven-and-one-half months after a rare disease made such everyday things impossible for now, doctors have hope that Kaitlyn will one day see, speak and eat regular food again. But when her Saratoga family gathers to say grace on this Thanksgiving Day, they know they already have been blessed with the biggest miracle of all: Kaitlyn survived. And she's thriving.

"When we were at the hospital, we were just trying to get through each day, not knowing whether Kaitlyn would live or die,'' her mother said. "Now that she's home, I have more time to think about our future and what it was supposed to be like.

"But then I think about the alternative, and I just thank God every day that we still have our Kaitlyn and that inside she is the same beautiful, smart, funny, creative little girl.''

Kaitlyn suffers from toxic epidermal necrolysis, a severe form of Stevens Johnson Syndrome. It attacks the skin and mucous membranes as the immune system turns on itself, forming blisters and lesions throughout the body that resemble second-degree burns. Most children do not survive.

In Kaitlyn's case, doctors believe the cause may have been an extreme allergic reaction to a medication she took for the flu.

Her skin has healed, but the disease destroyed the surface of her eyes and left massive scar tissue in her lungs and airways. She breathes bottled oxygen through a tube in her neck. And she has a feeding tube in her stomach.

"The closest thing doctors can equate the condition of her throat to is that of a patient who had swallowed lye,'' Kerry Langstaff said. "They equate her lungs to someone who has cystic fibrosis.''

This week, Kaitlyn summed up her condition this way: "I'm just a normal kid who got sick, and I'm getting better. But it takes too long.''

Long-term hope

Kaitlyn has to wait one to two years before surgery is attempted to open her airways. In three to five years, doctors think technological advances will give Kaitlyn a chance to have her vision restored.

"At first, we didn't think her eyes would be this bad, her throat, her lungs would be this bad, but it all turned out pretty bad,'' said her father, Brad. "But long range, it's pretty hopeful about fixing these things.''

For now, Kaitlyn hates being tied to her tubes. She hates being in a wheelchair even more -- with her portable oxygen tank and suction machine always hanging on the back.

"The hardest part for her is going to a place in public because she knows people might stare,'' said her friend Alexandra Gulesserian, who's 10 and has known her since Kaitlyn was 3.

"I'm just glad her brain isn't any different. She's the exact same person. We still talk about boys, girl bands and rock music.''

Kaitlyn became ill on a family trip in April.

That spring weekend was to have been a special one for the Langstaff family. Both parents had lost their Silicon Valley marketing jobs the summer before, but Kerry had just found a new one. The family was headed to Yosemite to celebrate when Kaitlyn ran a fever and lost her appetite.

They never made it to Half Dome.

After the disease set in, Kaitlyn spent 110 days in hospitals.

She was in intensive care in Los Angeles for 44 days, her parents at her side, her sister, Kelly, 12, flying down on weekends. Later, she was transferred to Lucile Salter Packard Children's Hospital at Stanford and then San Jose's Valley Medical Center.

Finally, on July 26, Kaitlyn went home.

Two weeks later, she announced that she wanted to go back to school. She would be there for the first day of third grade in Julie Dorsch's class at Forest Hill Elementary School, just like her friends.

That left about a month for her parents, the school district's nurse for special education and other officials in the Campbell Union School District to pull off some logistical miracles. Kaitlyn needed a specially trained health aide; she needed room to store her oxygen bottles; she needed an educational plan suited to her special needs; and she needed one of her parents to go to school with her every day.

"At most school districts, she'd still be at home,'' said Jane Wilson, the district's special education nurse.

The Langstaffs alternate going to school with Kaitlyn. They also alternate getting up during the night. Kaitlyn -- and her parents -- wake up every hour, when her tracheotomy tube has to be suctioned. In addition to the 1 1/2-hour lung treatments at night, there are another 1 1/2 hours of treatments and medicines in the morning. Many afternoons, she has doctor's and physical therapist appointments after school.

"It's been a little overwhelming, all of the emotional adjustments she's having to go through,'' said her health aide, Nicole Zannini. "Most of the kids I've worked with were born with disabilities. Kaitlyn isn't used to having people doing things for her.''

She didn't have to worry about falling behind in class.

"She has such an incredible intellect. She is light years ahead of most of the kids,'' said Dorsch, Kaitlyn's teacher.

Her classmates adjusted quickly. None of them is distracted when Kaitlyn requires suctioning, and all of them know her hand will be one of the first to go up when their teacher asks a question. Most days on the school ground, one to two dozen kids flock around her, making her "feel like Britney Spears.''

Can-do spirit evident

"Overall, it is a very positive experience,'' Dorsch said. "It shows a lot of kids and the adults this can-do spirit. And she's very much a perfectionist. If we ask her to do something different from the other kids, she doesn't like that. She wants to do it the way everybody else does it.''

That includes learning cursive and writing out some of her homework. Kaitlyn also uses special software with her laptop that sounds out each letter, allowing her to write poetry again. She's been writing a poem a day and was one of three winners in her school's Thanksgiving essay and poetry contest.

And she hasn't let her disabilities deter her goals. Since kindergarten, she wanted to be on the student council.

She wrote her own speech. She used a catchy campaign slogan suggested by her sister: "Don't be a Dum Dum. Be a Smartie and vote for Kaitlyn.'' And she handed out Smarties candies.

Kaitlyn was elected to the student council; her good friend, Ariana Gomez, was selected as an alternate.

``I think Kaitlyn is doing better because things just come to her mind faster, and she thinks about things more,'' said Ariana, who's also 8 and has been friends with Kaitlyn since first grade.

Kaitlyn started learning Braille a few weeks ago and is thrilled she will be able to read again, instead of listening to books on tape. It's part of her plan to be more independent.

``Kaitlyn asks me every day if she will be able to get her driver's license when she turns 16,'' her mother said.

Her parents are making sure she has many of the same opportunities as before. Kerry Langstaff is a Brownie troop leader, and Kaitlyn attends every meeting. Her father is active in the YMCA Indian Princess Program and took Kaitlyn on a two-day camping trip in Boulder Creek.

When the other kids went on a trail through the redwoods, Brad Langstaff and John Vlay, one of the other fathers, muscled Kaitlyn's wheelchair through the dirt and roots so Kaitlyn could go along.

``I don't want to not do something because it's too much hassle,'' her father said. ``Kerry and I pick each other up. If I'm having a bad day, Kerry will take over, and I do the same. It takes all of us.''

Her sister, Kelly, may hold the biggest key to Kaitlyn's recovery. She treats her like she used to -- like a baby sister.

``She is just my sister, Kaitlyn,'' Kelly said. ``She still has that part in her hair that won't go straight.''

Last Thanksgiving, the whole family was involved with a play at Kelly's school, Rolling Hills Middle School. Kerry Langstaff produced the play, Brad Langstaff designed the sets, Kaitlyn helped paint them and Kelly was in the cast.

This year, Kaitlyn and her parents listened from the audience as Kelly performed in the school's production of ``Annie.'' The next day, Kaitlyn told her mother she wants to be in the San Jose Children's Musical Theater production this summer.

Support network

The family used to being the ones to help -- the family first in line to do things at school or their daughters' sports events -- is finding its way.

Brad and Kerry are still without jobs and get tears in their eyes when they talk about the many people who have stepped forward to help them. They have used up their savings and cashed in their 401(k).

Kerry has been able to take on two small clients in her marketing consulting company, and Brad is trying to decide on a new line of work since there is no longer the same demand for the high-tech trade shows he helped organize.

``It's taught us to worry less about small and big things,'' Kerry Langstaff said. ``My car was in a hit-and-run while parked outside the school. The driver's door is dented and won't shut all the way, but I just said, `Oh, well.' Our roof started leaking during the big rainstorm recently, and we can't afford a new roof or contractor but, oh, well. There are more important things to worry about now.

``Whatever we are faced with, we will endure,'' she said. ``Our future may look different but that doesn't mean it will be bad. I truly believe that God has a special plan for Kaitlyn.''


A fund has been established to help the Langstaff family pay living costs and expenses not covered by medical insurance.
Donations may be sent to Kaitlyn Langstaff, c/o Forest Hill Elementary School, 4450 McCoy Ave., San Jose, Calif. 95130.
Checks should be made out to the Kaitlyn Sierra Langstaff Fund.