Kennedy had just turned 12 at the time of her diagnosis. She had been struggling with intermittent vomiting. I noticed that she had lost some weight but attributed it to her very busy and active basketball season. I took her to the doctor for an exam on a Friday. She didn’t comment on anything regarding her physical exam but ordered a few blood tests, just to check out organ function. On the following Monday, the clinic called and said Kennedy had increased liver enzymes and wanted her to have an ultrasound, which was scheduled for the following day. I knew right then that something was horribly wrong. We barely made it home from the ultrasound appointment and the clinic was calling telling us to come back in. When we got there, they told us that there was a large tumor on her liver and they had already set us up for an appointment at the closest children’s hospital the following morning.

Her morning consisted of an MRI, CT scan, and lots of blood work. A few hours later, the oncologist took us in a room and told us they were pretty sure Kennedy had hepatocellular carcinoma, a liver cancer that is extremely rare in kids in the United States. She actually had three areas of cancer on her liver—a very large tumor hanging off the left lobe and two large, ill-defined areas of cancer in her right lobe. The only good news was that there were no signs of cancer anywhere else; it was all contained to her liver.

We took Kennedy to a different and well-known hospital for a second opinion. The pediatric oncologist there was honest in telling us that there wasn’t a protocol for this type of cancer in kids. We also met with a surgeon who worked exclusively with livers. He informed us that attempting resection at this time would be a huge mistake. Treatment was to consist of cisplatin and doxorubicin infusions done inpatient at the hospital. Then, she would start the newer oral chemo medication called sorafenib and take it twice daily until her next IV chemo. The entire cycle was 21 days in length. Honestly, I questioned whether or not we should even do chemo. The prognosis was grave and I didn’t want the last days of her life to be full of the type of suffering she was about to go through. I talked to her oncologist about my feelings and she assured me that we would know early on if this was working or not. We would do two cycles and then repeat scans. They also followed a tumor specific protein called AFP to give us an indication of tumor response.

After two rounds of chemo, she had repeat scans. We were all shocked to hear that her tumors had shrunk 50%! Each round continued to bring a drop in her AFP and shrinkage of her tumors. After five rounds of chemo and one round of chemoembolization, she was listed for transplant with a Status 1B, which is a rare listing type reserved for kids. Within 5 days of her Status 1B listing, we received a call that 5 months prior wasn’t even a possibility. On May 27, 2012, Kennedy received a lifesaving liver transplant.

Coley’s surgery was very scary, I think more for us than for her. She has been my role model for bravery throughout the entire process. The surgery took a few hours and has left her with a large scar that goes from one side of her stomach to the other in an upside down U. I was very scared to see her in intensive care, because I was afraid that I would break down when I saw her with all those tubes. But after waiting all those hours, when we were finally able to see her, she looked so beautiful. She had made it!