When you're a candidate high on a transplant list, every day is like being nine-months pregnant, just waiting for your water to break. It can happen at any time.
For 16-year-old Caleigh Lans, the call came at about 11:30 p.m. March 13, the night of a severe rain storm that knocked the power out from many homes in the state.
The Pascack Valley High School sophomore was diagnosed with Primary Sclerosing Cholangitis about two years ago, a disease that inflames, scars and destroys the ducts inside and outside the liver. Always a healthy child, in 2007 Caleigh began suffering from abdominal pain and rapid weight loss. The itching had become unbearable – lotions, creams, nothing helped. After a trip to the emergency room and a visit with a specialist, the family discovered what was wrong, but doctors said it would be controllable with medication, and possibly a transplant 10 years down the line.
What they didn't know was how severe the disease could get, and how ineffective the treatments would be for Caleigh's condition. The disease ebbs and flows in waves, said her father, Jared, an attorney in Hackensack. When the symptoms were mild, Caleigh would feel nearly like her old self, but the flare-ups could be torturous. "If you can control the flares, you can live with it for as long as possible," he said. "But when it got bad, she was really, really sick."
Last November was one of the worst times. Caleigh was in and out of Hackensack University Medical Center for procedures that were supposed to lessen the symptoms. Nothing worked, and eventually the family decided to take the trip to the Mayo Clinic in Minnesota to get a second opinion.
"She had been poked and prodded so much," said Jared. "Everything would just make her sicker. We finally went out to the Mayo Clinic and she got really sick while we were there. And after doing all sorts of tests, they said, 'Her liver's shot – she's got to go on the list.'"
The call came just two months after Caleigh was put on the transplant list, with the wind from the March 13 storm rattling all the windows in the family's River Vale home. Caleigh's older sister Shayna was taking the SAT the following morning and was left sleeping in her bed as the rest of the family made the trip to Columbia Presbyterian Hospital in Manhattan, where the surgery was to be performed. Caleigh's older brother, Zach, is in college at Boston University.
"The night of the storm, it was crazy," recalled Caleigh's mother Nancy. "The windows in the hospital were shaking, it was pouring. I looked down at the street below and there were umbrellas blowing every which way."
The liver was flown in from Albany, N.Y. to Teterboro Airport, and then driven to the hospital. Nancy said that she can hardly express the gratitude she feels for the family who made the life saving choice to donate their son's organs. "It was a tragedy for that family, of course. It's just the most altruistic thing you can do; in the midst of tragedy, to give someone life." Nancy said the family plans to write the donor family soon to thank them for saving Caleigh's life.
Caleigh, feeling better than she has in more than two years, said she is looking forward to going back to school. Eventually she hopes to play competitive sports again and get her driver's license. "I used to be a huge soccer player, but then I wasn't able to play contact sports. It's great. I just feel so much better now."
Last month was Donate Life Month, and the family, especially Shayna, has worked to raise awareness about the importance of becoming a donor. Shayna, a junior, has also been active at Pascack Valley High School, selling bracelets and tee shirts to fundraise for the Children's Organ Transplant Association (COTA), an organization that helps families pay for the cost of the transplant and related expenses.
In Caleigh's case, COTA, with the help of several of the Lans' close family friends, are working to raise about $85,000. "It's really for her entire lifetime," explained Jared. "She will need medication for the rest of her life, and this money will be available only to her to pay for that, and additional expenses down the road. It's really an amazing organization."
On April 20, Caleigh's birthday, high school students and faculty wore shirts designed by Shayne reading "COTA for Caleigh." During that week, the high school donated 10 percent of its lunch proceeds to COTA. A fundraiser will be held May 4 at the Florentine Gardens in River Vale and the River Vale Police Department will hold a "Dodge the Cops" charity dodgeball tournament on Saturday, June 12 at Holdrum Middle School to benefit COTA.
Touched by the outpouring of support, Nancy and Jared said how grateful they feel for the community they have called home since shortly before Caleigh was born. "It's overwhelming, the support we have received," said Nancy. "Friends, neighbors, people that hardly even knew us have come forward to help out. It's really humbling."
E-mail: burrow@northjersey.com
A dinner to benefit the Children's Organ Transplant Association (COTA) funds for Caleigh Lans will be held on May 4 from 7 to 11 p.m. at Florentine Gardens in River Vale. To register for the dinner, or to donate to COTA for Caleigh, visit www.COTAforCaleighL.com.
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