Ready to Light the Night

Ready to Light the Night

Three year old to participate in Saturday’s Leukemia & Lymphoma Walk in Reston despite relapse.

A little more than three years ago, Ken and Carrie Holdcraft were happy parents of two teenage daughters, Bethany and Sarah, ages 15 and 18. The Sterling couple had not envisioned bringing another Holdcraft daughter into the family fold while in their 40s, but that was exactly what happened. "She was our bonus surprise," a laughing Ken Holdcraft said.

Three years later, neither parent can picture their life without their youngest daughter, Leah Jean. "Back then before we had Leah, our family felt complete," Ken Holdcraft said. "But, now, honestly, I can't imagine our family without her. She has been a blessing."

Three months shy of her second birthday, Leah was like any other energetic toddler, her parents said. Then on Nov. 25, 2001, Leah was diagnosed with acute lymphoblastic leukemia, or ALL, the most common form of childhood Leukemia affecting one of every 2,000 children.

On Saturday, Leah, and her mom Carrie and dad Ken, will be in Reston along with an anticipated 2,000 other patients, family members, supporters and fellow cancer survivors at the 5th annual Light the Night Walk.

BLOOD-RELATED CANCERS currently affect more than 600,000 people nationwide and an estimated 60,000 of these will die this year. With stories like Leah's, the walk, sponsored by the Leukemia & Lymphoma Society, helps provide hope to cancer patients, as well as their families and friends who are coping with these diseases.

The treatment of cancers like the one that struck Leah has come along way, her dad said. "I can't praise the work of the Leukemia-Lymphoma Society enough," Ken Holdcrast said, watching his smiling daughter play on his living room floor. "That is why this walk is so important — more work is still ahead."

Last year, Carrie Holdcraft took part in the 4th annual Light the Night Walk and the family's team, "Leah and Friends," raised more than 28,000, the most of any team in the Reston walk. "We didn't know what we were doing," Carrie Holdcraft said. "But whatever we did worked."

Because "Leah and Friends" fundraising success, Leah and her family led the evening walk, balloons in hand. "When you see all those while balloons, it really hits you," Ken Holdcraft said.

"You don't realize how many people this disease affects until it hits your own family," Carrie Holdcraft said. "We have met so many incredible new friends throughout this."

IN AN INSTANT, Leah and her family's life changed when she was first diagnosed. Play dates in the park were replaced by outpatient visits to the Fairfax Clinic, trips to McDonalds were supplanted by chemotherapy sessions, spinal taps and overnight hospital stays in Washington. Because her cancer was so progressed at the time that doctors at Children's Hospital in Washington diagnosed it, Leah immediately began chemotherapy.

Her parents meanwhile took what they described as a "crash course" in biology. "You learn a lot on the go," Ken Holdcraft said. "The doctors at Children's have been there every step of the way."

To the relief of her friends and family, Leah's cancer went into remission on the 15th day of treatment which was scheduled to be completed on Jan. 29, 2004.

"She has been an amazing patient," Carrie Holdcraft said. "The doctors recruit her to help teach new patients. She really loves going to the hospital, believe it or not."

"Most of the experience for Leah, to this point, has really been pain-free," her dad said.

"For Leah, it really has been a positive experience," Carrie Holdcraft said. "One time, she looked up at me while we were at the outpatient clinic and said, 'Don't worry, you go home now and I'll go home with Mary,' Mary is her nurse practitioner. She loves the staff."

BUT LEAH'S BATTLE is not over. The roller coaster ride that she and her family have been on took an unexpected dip early this summer. To the dismay of everyone, Leah suffered a setback in May, 18 months into her treatment. On May 29, doctors informed her parents that the leukemia had returned, once again . Two days later, the three-year-old started a new protocol of treatment. Leah was the first child at Children's to undergo such a treatment, which ended on Sept. 30. Later this month, Leah is scheduled to undergo a bone marrow transplant. "The prognosis is good if you get through the entire treatment," Carrie Holdcraft said. "But if you relapse during the chemo which Leah did, it is much more serious and that is why we have to attack it so aggressively."

After Leah's transplant, which will consist of two separate surgeries, and a 100-day home confinement, Leah and her family will fly to Florida, courtesy of the Make-a-Wish Foundation. Leah has always wanted to go to Disney World, her parents said.

"I am going in all the castles," the toddler said excitedly. "Well, actually just Belle's castle and Cinderella's castle, not Snow White or Sleeping Beauty."

Despite all that she has been through, Leah is still a normal precocious three-year-old. She loves playing dress up and playing doctor with her favorite doll.

"I love to make messes," she said, while pouring the contents of a new game on her living room floor.

And while the last 22 months have been the "most difficult of their lives," the Holdcrafts credit their faith in God and the prayers and encouragement from friends and family with getting them through the tough times. "We know that Leah is a gift from God and we know that He controls every circumstance," Carrie Holdcraft said. "We know He has a plan for her. God's power in our lives helps us get through this."

Because Ken Holdcraft lost his job shortly after Leah was diagnosed, the family had to scramble to find and afford COBRA payments. Almost immediately, an anonymous donor from their church, the Harvest Christian Fellowship in Reston, stepped up and has paid for every COBRA payment for the past year. "It's an incredible blessing," Carrie Holdcraft said.