October 22, 2008
They never run out of patients
An Iranian Jewish girl was going through chemotherapy treatment -- which tends to suppress your appetite -- but one day, she got this craving for a lamb stew with carrots. Within an hour, someone was headed to the nearest Persian restaurant to get the dish and bring it to the girl.|
Another young patient was in Minnesota for a special medical procedure. She was used to getting challah delivered to her every Friday afternoon while she was in Los Angeles. Again, just like magic, a FedEx package arrived before Shabbat with her favorite challah.
A mother and father decided, at the last minute, that they both wanted to spend the night at the hospital with their young child, who had a serious illness. No problem: a babysitter immediately showed up at their house to take care of their other children, including helping them with homework and serving them dinner.
Where did all this magic come from? Not from the Magic Castle, but from a little Jewish organization called Chai Lifeline.
For many years, because of its highly visible banner on the corner above Pat's Restaurant, where it rented office space, Chai Lifeline was a fixture in the heart of the Pico-Robertson neighborhood.
They recently moved to a less visible but larger location a few blocks west, where they can now accommodate their growing list of volunteers. I went by there the other day and met one of these volunteers, a mother of four named Helena Usdan.
Usdan fell in love with Chai Lifeline 18 years ago when she was a counselor at their Camp Simcha back East, and helped open the West Coast office nine years ago. She told me that one the best decisions they made was seven years ago when they brought in executive director Randi Grossman, who had worked for many years at Childrens Hospital Los Angeles.
Grossman runs a cause that's all schmaltz, but she's all business. Perfect manners. Perfect tone of voice. Perfect answers. Still, behind the professional demeanor, she'll choke up at a video of someone Chai Lifeline has helped.
Like little Chana Bogatz, who was born with a rare renal disease and received a kidney transplant before turning 1. When the new kidney began to fail, the doctors told Chana's parents that she would need another kidney to survive, but the high percentage of antibodies in her system made finding a compatible donor almost impossible. So they needed to get the word out to as many people as possible.
Grossman and her staff had already become an extension of the Bogatz family, so they put on their PR hats, and in partnership with Chana's parents, helped get three stories over several months onto the evening news about the urgent need for a kidney. By the third, a donor was found, and Chana made it.
But not every story has a happy ending.
A few weeks ago, Grossman had to cancel a breakfast meeting because one of their kids "didn't make it."
It doesn't happen often, she says, but death is not something she's comfortable talking about. That's why they never use the word "terminal"; they say "serious" or "life-threatening." They let God and the doctors worry about things like "terminal."
Grossman and her group worry about the "life" part -- adding joy to the life of the children and doing whatever it takes to ease the lives of their families.
Many of these seriously ill children and their families were present last week at Chai Lifeline's annual signature event: A community-wide carnival at the Scandia amusement park in Pomona during the Sukkot festival. I was there, but I couldn't really tell who the seriously ill children were.
I guess when kids are having a ball, it's hard to tell them apart.
Having a ball is one of Chai Lifeline's basic services. When I hung out in their office, at one point it felt like being in one of those creative brainstorming sessions in an advertising agency. They're always bouncing ideas around to come up with creative ways of helping their "patients."
A young boy with a serious illness was a big football fan. So Grossman, Usdan and the staff made some calls and found someone to donate two Super Bowl tickets, and someone else to sponsor the trip. When the boy found out about the trip, his parents said it was "the first time he smiled since getting his diagnosis."
Over the years, they've used their creativity to develop a slew of different programs, like KidShops (art therapy for patients and siblings), Wish at the Wall (trips to Israel), Chanukah Angels (adopting a child for Chanukah), Seasons of Respite (separate retreats for mothers and fathers of patients), and ChaiLink (individual tutors and Web cam-based connections between classrooms and homebound or hospitalized children).
One of the best things I heard, though, was a lot more mundane: They have a team of professional advocates who help parents navigate the complex bureaucracy of insurance coverage for serious and long-term illnesses. (That comes in handy when you have an insurance company that covers an electric wheelchair but won't cover the electric wheels.)
I couldn't leave without asking Grossman what it was like to spend so much of her waking hours dealing with seriously ill children and their families. Isn't it draining? Isn't there a burnout point, when it gets just a little too heavy?
"It's the good news," she says. "The little moments of joy, the recoveries, the smiles on the kids' faces, the gratitude of the parents, the generosity of all the volunteers, all those things help."
I thought of something else that probably helps: The unspoken gratitude any of us would have to be in the position of helping people with a life-threatening illness, rather than being the person needing that help.
When I brought that up, Grossman -- all choked up again -- just nodded quietly.
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