Faith, Family, and a Lifesaving Liver Transplant: Kayleen's Journey

Kayleen’s family was in the process of planning and finalizing a big Sweet 16 celebration for her in their hometown of Hackensack, New Jersey, when she started having stomachaches. When the pain progressed, her mom, Teresa, took her to urgent care. Just to be sure it wasn’t serious, urgent care doctors took an X-ray of her stomach before sending Kayleen home with acid reflux pills. Before Kayleen and Teresa made it home, however, the urgent care called, bringing them to return to the urgent care center for further imaging, where they found Kayleen had a 7.5-inch mass in her abdomen. From there she went straight to the local emergency department. 

Testing at the hospital showed that Kayleen had a rare, fast-growing malignant liver cancer called undifferentiated embryonal sarcoma of the liver (UESL). During her hospitalization, she developed additional complications, including jaundice (yellowing of the skin and eyes), severe swelling in her legs, central line infections and side effects related to her cancer treatment. She also experienced significant difficulty eating, ultimately requiring the placement of a feeding tube for nutritional support.

Finding the right fit

Teresa spent many days in the hospital caring for Kayleen and researching UESL. After months of chemotherapy, the doctors told her that the only other treatment option was radiation and that Kayleen wasn’t a candidate for surgery or a transplant.

“That's when I told my sisters, ‘Let's try to find answers somewhere else. Wherever we have to go, we'll go.’ A Facebook Group led us to a surgeon in Texas, Dr. Vasudevan, who had successfully treated a patient with the same type of cancer years ago,” said Teresa. 

Dr. Sanjeev Vasudevan, co-director of the Liver Tumor Program at Texas Children’s Hospital, reviewed Kayleen’s case with other doctors on his team. They monitored her progress over a few days and reviewed her test results before accepting her as a patient.      

Upon arriving at Texas Children’s via air medical transport, additional evaluation revealed that the margins of the large tumor in her liver were dying, likely as a delayed response to her chemotherapy treatments. Its location and size, however, made it difficult to remove from Kayleen’s liver. Kayleen would need a liver transplant to survive the cancer. 

“We had a lot of faith. My family supported us. They prayed with us over FaceTime. But it was a difficult time,” said Teresa. 

A community at Texas Children’s

Kayleen spent 4 months at Texas Children’s, so she got to know the doctors, nurses and support staff well. Resources like Texas Children’s support dog, Lawton, and a playroom helped keep Kayleen’s spirits up. Child life specialists were especially helpful to provide activities and help her understand her treatment and diagnosis. 

“Chelsea from Child Life would always visit me when she was working, bring me activities and help distract me. The day of the transplant, she knew that I was very nervous and anxious, so she explained to me what surgery would be like. She even went with me to the operating room to offer a little bit of comfort going into surgery,” said Kayleen. 

Kayleen was also able to interact with the other patients, forming a special bond with a 5-year-old girl with her same cancer diagnosis, who also received a liver transplant. 

Heading home

Kayleen’s transplant occurred quickly — only a few weeks after she was placed on the waiting list. Following close monitoring in the hospital and some complications, she was able to end her 6 month series of hospital stays and return home to New Jersey. 

Kayleen’s family has renewed their plans for her birthday celebration. Her Sweet 16 has passed, but Kayleen is now busy practicing her court dance for a big Sweet 18th birthday celebration with friends and family. 

“We thank God for this incredible miracle — for guiding us and giving us strength each day. We are deeply grateful to Dr. Vasudevan for his kindness, support and for the way God worked through him in making the hospital transfer possible at just the right time. We are also grateful for      Dr. Goss and his transplant team for their compassionate care and dedication. We especially      extend our heartfelt thanks to the donor and their family for the priceless gift of life they gave us during such a difficult time for them,” said Teresa.

Just keep going

To other families facing serious childhood illness, Kayleen and her family credit their faith and their family ties with their ability to persevere through the difficulties of a prolonged hospital stay and the uncertainty of a cancer diagnosis. 

“I would advise anyone facing cancer to keep a positive mindset, be strong, take it one day at a time and don’t forget to laugh and smile,” said Kayleen. “Most important is to never give up, to trust God and just keep going.”

An organ donor can save up to eight lives. To learn more and become a donor, visit Donate Life Texas or Life Gift. 

Or, learn more about pediatric heart transplant at Texas Children’s.