Kielan was diagnosed with FHCC in April 2012, when he was 13 yrs old.  He initially went to the ER for what we thought was appendicitis however, during an ultra sound we learned he had a grapefruit sized tumor. They immediately made arrangements to transport him about 2 hours away to Seattle Children’s hospital and 1 day later he underwent surgery to remove about 70% of his liver.  They removed the tumor, his Gallbladder, and the Lymph nodes in the area.  He remained in the hospital for about a month with many ups and downs to include some additional biopsies of lymph nodes around his heart.  He was sent home with a stage 1 fibrolamellar hepatocellular carcinoma diagnosis and not much information except they believed they had removed it all.

Kielan had scans every 3 months for the first year and then every 6 months for the second. On his 2 year anniversary check-up, April 2014, they discovered his cancer was back and had now metastasized. They found a tumor in his abdomen that had began attaching to his Pancreas.  He immediately underwent surgery to remove the tumor and upon returning home from the hospital, got a call that they missed a tumor in his lungs.  He went back 2 days later and had surgery to remove a portion of his lung and get the newest tumor out.  After a challenging recovery from the lung surgery, we were told they had clean margins on the tumor removed from his lung but not on the tumor removed from his Pancreas area.  He was diagnosed state 4 and they recommended he be watched close and go back to 3 month scans.

At his 9 month scan, January 2015, there was a new tumor discovered in the same area of the abdomen as the prior one.  It was close to the Spine, Kidneys, and against the Pancreas. They toyed with what to do for a couple months due to its location and it recurring in virtually the same place, and decided to remove the tumor paired with intra-operative radiation.  Kielan underwent another surgery and the new tumor was removed along with other lymph nodes.  This time we had clean margins and the radiation during surgery went well.  After he recovered from the surgery Kielan was administered 6 weeks of radiation 5 days a week.  He is currently NED as of Sept 2015.

An update from Kielan’s Mom March 2017, via facebook… “First time in 5 yr. fight….scan results…2 yrs. NED!!! … Keep fighting that fight y’all. Each day is a new one!!”