By Jennifer Kohlhepp, Staff Writer
Kim and Will Perrine’s daughter, Kirsten, was diagnosed at 21 months old with neuroblastoma, which is a form of cancer that develops at birth and is very difficult to cure.
Doctors found it in her heart, and she immediately underwent aggressive chemotherapy treatment at Children’s Hospital of Philadelphia for the next year of her life. Her protocol included daily shots, three surgeries and two stem-cell transplants followed by a strict six-month at-home isolation period due to her severely compromised immune system and T-cell deficiency.
”Just before her third birthday, she was declared in remission,” her mother said. “However, the internal damage to her vital organs due to the intense chemotherapy was irreversible.”
Although Kirsten was in remission, she was continually under CHOP’s care with eight different specialty groups monitoring her for heart, lung, hearing, vision, gastrointestinal, growth and immunological damage.
The following 10 years, Kirsten was in and out of CHOP, sometimes staying for periods as long as five months on end.
”She suffered from many ailments at this point,” her mother said. “It didn’t matter what it was; to her, it was just her normal life. She didn’t know there was anything else.”
Kirsten was 12 years old when she died in December 2011.
”She was our angel and most precious love,” her mother said. “She showed all those close to her the meaning of life. At such a young age, she taught us strength, inspiration and hope. Everyone loved Kirsten, but the most special part about her was the way she loved you. Most who knew her would describe her as a firecracker or a sassy sweetheart, so tiny with a humongous heart.”
Kirsten adored turtles, enjoyed cooking and dreamed of being the next Food Network star. She was selected as a Hero of Hope ambassador for the American Cancer Society and also was extremely dedicated to forming teams for annual walks and fundraising for the Make-A-Wish Walk for Wishes and the American Cancer Society’s Relay for Life.
”Even when confronted with the impossible, she preserved,” her mother said. “She was truly an amazing little girl.”
During Kirsten’s illnesses, the nurses, doctors and Child Life specialists at CHOP became her family.
”Any parent who has had the tragic experience of spending time at CHOP will tell you what a remarkable place it is,” her mother said. “Giving back to CHOP comes natural to us. Their Child Life program is exceptional. It enables children to embrace some sense of normalcy in an atmosphere where there is chaos and fear.”
Kirsten was often in isolation so the Child Life specialists would visit her in her room to play games, do crafts or just talk. When she was frightened or anxious, they found ways to calm her.
”They are the extraordinary individuals who put the magic of childhood back into these children’s lives through music, art, therapy dogs, proms and many other events, including Build-A-Bear Day,” her mother said. “Kirsten’s love for Build-A-Bears began on her first Valentine’s Day spent at CHOP. She was in with pneumonia, and her dad’s gift to her was a beautiful pink Build-A-Bear in heart pajamas who shouted ‘I love you’ when you pushed her paw. She fell in love with her.”
Then, upon her feeding tube placement, she was truly reluctant and frightened so her family gave her “Tuck” the turtle.
”It was such a simple gesture, but the comfort and joy it brought her was so priceless,” her mother said. “Her 12th and last birthday was spent inpatient with Tuck battling meningitis. Sadly, she refused all visitors.”
The Perrines lost their angel eight months later due to complications brought on by the effects of chemotherapy.
”After her passing, we recalled her last birthday and, in her memory, developed the gift of ‘Birthday Bears’ so that we could bring the comfort, joy and laughter to children hospitalized at CHOP on their birthdays,” her mother said. “We had such heartwarming support that the our gift quickly turned into a Build-A-Bear Day where patients could actually pick out a bear, wish on its heart, stuff it, dress it and receive a birth certificate.”
If the children are physically incapable of building a bear, they are able to select a bear created by those who donate them. Any leftovers are delivered to the neonatal department as a gift of hope.
”It is truly a magical and rewarding day that we hope to continue annually in remembrance of Kirsten,” her mother said.
This year Build-A-Bear Day is scheduled for Friday, May 29, at CHOP. The Perrines are collecting newly purchased Build-A-Bears, clothing and gift cards.
Throughout the entire month of April (Kirsten’s birthday month), donations can be dropped off at A&M Farm Market on Route 130 in Robbinsville.
”However, please note, bears will be accepted up until the event date,” her mother said.
Drop-off arrangements can be made by emailing [email protected].
”So why make a Build-A-Bear donation? It’s so simple. It’s the power to take a child’s fear and suffering away and give them the gift of comfort and a smile,” her mother said. “It’s an opportunity to make a difference so why not?”
Build-A-Bear eCards also can be purchased online for as low as $10 and emailed to [email protected].
