It’s April 3, 2012, and 15-year-old Colin Vengen is standing behind a podium at The Children’s Hospital of Philadelphia while news cameras look on. His mom, Tiffanie, is by his side.
They’re kicking off Donate Life Month, an annual campaign to raise awareness of the need for more registered organ donors.
The pair is here to tell their transplant story and give thanks to the people who went above and beyond to help save Colin’s life.
Diagnosed with liver cancer
It was about 14 months earlier that Colin first came to CHOP for a much different occasion. He’d been complaining of some symptoms that worried his doctor in Danville, PA.
Suspecting it might be another immune disorder — Colin requires weekly treatment for an immune disorder called Bruton’s agammaglobulinemia, which he’s had since birth — several diagnostic tests were ordered at his local hospital.
The results revealed two things. First was that Colin had celiac disease, a chronic gluten sensitivity that keeps the body from absorbing important nutrients. But more frightening was the discovery of several tumors on his liver.
Further tests confirmed his family’s worst fear: the tumors were cancerous. In February 2011, Colin was diagnosed with liver cancer. He was immediately transferred to The Children’s Hospital of Philadelphia to be seen by specialists experienced at treating children with this rare cancer.
Coordinated care for a complex condition
Colin’s multidisciplinary medical team was assembled quickly, including specialists who worked together to manage his care. He was treated by Kathleen Sullivan, MD, chief of the Division of Allergy and Immunology; Elizabeth Rand, MD, medical director of the Liver Transplant Program; Kate Anderer, MSN, CRNP, liver transplant coordinator; and Edward Attiyeh, MD, an oncologist in the Cancer Center.
“The combination of Colin’s cancer diagnosis and his preexisting immunological conditions made his treatment plan more complex,” says Kate Anderer. “Collaboration between every team member at CHOP and communication with Colin’s referring physician were very important in getting him the coordinated care he needed.”
Colin began chemotherapy, with the goal of shrinking his tumors and stopping the spread of disease to other parts of his body. His doctors also recommended a liver transplant, so Colin was put on the United Network for Organ Sharing (UNOS) waiting list.
Once on the UNOS list, it’s impossible to know how long a child might have to wait to get an organ transplant. Organs are distributed as they become available and are given to the sickest patients first.
In the four months Colin was waiting for the call, he completed the last of six rounds of chemotherapy. It was Sept. 8, 2011, when he finished his last scheduled cancer treatment.
Braving the storm for a new liver
The next day, Colin was at home with his family, about a 150-mile drive from Philadelphia. The remnants of Tropical Storm Lee were pounding much of Pennsylvania that day, including Colin’s hometown. Record-setting floods led to evacuations, shut down schools and closed all but one road in Schuylkill County.
At 11 o’clock that morning, as flood waters were rising, Tiffanie’s husband Jeremi answered the phone. It was Kate Anderer from CHOP, and she had great news: there was a liver for Colin, and he needed to get back to the Hospital as soon as possible.
As the liver transplant coordinator, Kate was immediately on the phone trying to find a way to get Colin and his mother to Philadelphia but options were limited because of the storm. No medical transport helicopters were taking off.
Police escort to the hospital
It was Pennsylvania State Police corporals and helicopter pilots Donald Hughes and Paul Roy who came through for Colin. Although no one else was flying out of Schuylkill County that day, the corporals volunteered to pick Colin up from the Schuylkill Haven State Police barracks and fly through the storm to Philadelphia.
It was a bumpy ride in the stormy weather, but they made record time. And with the morning’s panic behind him, Colin was prepped for surgery. When he woke up several hours later, Colin had a new liver and a new chance at a long, happy life.
Colin stayed at the Hospital for 16 days to recover, but was off all his pain medication in just three. What was most special to Tiffanie about the time they spent at CHOP was the way the medical team treated Colin, who has been diagnosed with Asperger’s syndrome, in addition to his other medical conditions.
“It’s difficult to make a child with Asperger’s feel comfortable with a doctor,” says Tiffanie. “I saw a huge change in how Colin acted and felt at CHOP compared to other places he’s been treated. When he’s at CHOP he is honest, open and willing to relax. With others, he becomes very introverted. Colin’s doctors and nurses understood that the more thorough they were when they explained things to him, the better he would feel.”
Thankful for another chance
Standing in the atrium at CHOP, Colin and Tiffanie are reunited with Corporals Hughes and Roy, and look on as their “angels in the sky” are presented with the Children’s Champion Award by The Children’s Hospital of Philadelphia and Gift of Life Donor Program, one of the nation's public bone marrow, blood stem cell and umbilical cord blood registries.
"Colin wouldn't be here without them,” says Tiffanie.
Today, Colin is a thriving high school student. He’s taking Latin this year. He hopes it will help him prepare for a career in medicine.
Originally posted: January 2013