Last year as my daughter, Kailyn, was starting eighth grade, she decided she wanted to play volleyball. She needed a physical to try out, so I took her to a local urgent care center for a basic sport physical. Because she had been diagnosed with a heart murmur when she was much younger, the doctor at the urgent care center would not give her permission to play and referred us to our pediatrician.
Luckily, her pediatrician was able to see her on a Saturday so she could get that sport physical done in time for tryouts. The appointment turned serious when the doctor started pushing on Kailyn’s stomach. She felt something hard and thought it might be her bowels. He told me to give her Metamucil and follow up on Monday for an ultrasound. On Monday, Kailyn called me from school to say that her stomach hurt. I took her straight to the ER.
In the ER, an ultrasound and CT scan showed a tumor in her abdomen. We don’t live nearby, but after the tumor was found, I quickly decided to transfer her care to C.S. Mott Children’s Hospital, due to the seriousness and rarity of the tumor
A biopsy confirmed that Kailyn had a rare liver cancer. Dr. Rajen Mody, our pediatric oncologist, said it was only the fifth case of this type of cancer, primary liver undifferentiated sarcoma that he’d seen in 20 years. Because the cancer was so rare, there wasn’t much research about it, which was scary.
We were impressed at how quickly Kailyn’s care team was able to pull all the pieces of her treatment plan together. Her biopsy diagnosis took place on September 15, and Dr. Erika Newman, a pediatric surgeon with the Solid Tumor Oncology Program at Mott, removed the four-pound, 18 cm tumor from Kailyn’s right lobe of her liver just 14 days later.
The surgical team was hands-down the best. They were amazing. All the margins around the tumor were clear, which was good news. Kailyn now has a cool upside down Nike swoosh scar on her belly.
After surgery, Kailyn had several rounds of chemo. Her last chemo ended on April 13. All of her scans are clear. Her hair is growing back and she’s gaining some of the weight she lost during treatment.
We were able to go on our Make a Wish trip in February, and Kailyn was able to see Hollywood! We also went to Michigan’s Adventure and Cedar Point this summer, which was fun! But for the most part, we gave her rest to recover after the year she had. Kailyn was quite amazing as she still was able to go to school for most of her 8th grade year, in spite of the surgery and chemo. She’s a true Fighter! .
Kailyn just started her freshman year of high school. Her experiences at Mott have inspired her to consider a career as a tumor specialist or anesthesiologist. For now, she’s concentrating on her school work and has plans to try out for the softball team this year.
Take the next steps:
- Discover how you can play a part in the fight to Block Out Cancer.
- Learn more about rare liver tumors.
- Learn more about the Mott Children’s Hospital Solid Tumor Oncology Program.
Block Out Cancer is a rallying cry for people from all walks of life to come together to support the fight against children’s cancers. Everyone has a role to play. Learn more about how you can help Block Out Cancer.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.