2019 Flavors of Northeast Ohio LIVEr Champion: Jack Hickey
The whole ordeal started with a nasty virus that both Chloe and Jack came down with the weekend before St. Patrick’s Day, 2015. Chloe managed to make it to school a day or two that week, but Jack was out the entire week with seemingly never-ending stomach issues/fever. On Friday, March 20th, things got strange, as Jack’s hands and feet were suddenly covered in hives. The family didn’t know if he was having a dangerous allergic reaction to something or what else it could be, so they took Jack to Fairview Hospital ER. They left not knowing what caused the hives, but after Chloe broke out in them the next day, they figured out that they were yet another pleasant symptom of what we would later find out was Norovirus. While at the ER, the nurse practitioner commented on Jack’s protruding tummy. They had assumed he was just bloated from having been sick all week.
It seemed Jack was finally about over this crazy-long virus and he went to school that Monday and Tuesday, but when he got home, he complained of pain in his abdomen while running around in gym class. His belly also was harder and more distended. This was obviously concerning, but it was bedtime and he was not crying out in pain, so they tried some Pepto and decided to see how he felt in the morning.
When the family woke up, Jack’s parents called the nurse phone line because he was still in pain and not acting well. She suggested that if Jack would not jump up and down with his hands in the air that we should go to the ER. They thought he might have a bowel obstruction, or maybe appendicitis. So back to Fairview ER Jack went, and they decided to do an x-ray.
He was almost sent home after bowel obstruction and appendicitis were ruled out, but something about the x-ray bothered the “Guardian Angel” doctor, and she fought to get a CT scan ordered. Jack got an IV so that they could use contrast in the scan, and his parents were getting more nervous at this point, but they never could have imagined the news to come.
The family was told that there was something very unusual and that Jack’s liver looked very small and “eaten away” around the edges. Shocked, his parents wracked their brains trying to come up with how his liver could be damaged. Did he ever eat a bottle of medication? No. Have they traveled outside of the country? No. Did Jack ever have hepatitis? No. The pain of not knowing what was going on was excruciating. When people say about moments in life like this, “time stands still,” it does. It was totally surreal, almost an out-of-body experience.
Shortly after receiving the news, his mom and dad were told that Jack would need to be transferred by ambulance to the Cleveland Clinic main campus to meet with specialists and have more testing.
Jack ended up staying at Cleveland Clinic Children’s Hospital through the rest of March. At first, he was very sick, as his stomach issues/high fever returned. The doctors ran countless tests trying to ascertain what kind of virus was attacking his body, and if the virus and liver disease were related, or separate from one another. Jack was incredibly brave and an amazing patient. He was so cooperative and stayed in such great spirits. He started to refer to nurses who would come in the wee hours of the morning to draw blood, as his “vampire friends.” He even started critiquing their technique! Many people commented on his positive attitude and sweet disposition. Finally, by the weekend he was feeling a bit better. He even hosted a “party” in his room for the Nickelodeon Kids Choice Awards. His aunts helped him make the decorations. The family was all so excited that Sponge Bob Square Pants ran away with the award for the best cartoon!
Fortunately, the virus was under control, but the damage to his liver could not be undone. His liver was 90% scarred, had 2 cancer lesions, and his doctors could not figure out what caused this damage. The doctors tested for every metabolic and disease condition that they could imagine, and Jack has been negative for all of them. At the end of March, Jack had a transjugular liver biopsy and MRI. These tests confirmed the doctors’ suspicions. The family was told that a transplant would be Jack’s best/only option for a healthy life. At this point, Jack named his diseased liver “Old Hideous.” Soon after hearing this news, he started some of the tests necessary to be sure that his body was healthy enough for a transplant. He had an echocardiogram, an EKG, a chest X-ray, a bone age test, MANY vials of blood work, a meeting with an Infectious Disease Specialist, and many more.
Nothing in life prepares a parent to hear to that your 7-year-old child, that has previously been the picture of health, has stage 4 liver cirrhosis and liver cancer. Jack was officially listed on the National Donor list, but his PELD score was not high, because he was not terribly sick at that moment. The problem with this advanced level of damage is that one day soon, he would suddenly become very ill unless he were to get a new liver. His best chance for a positive outcome was a living donor, and fortunately, the family was able to have one. Many of Jack’s brave cousins got tested to see who a potential match would be, and Matthew Geib was chosen as the best match. This brave guy was ready and willing to put his college hockey career on hold, spend many hours in surgery, take on quite a scar, and share a piece of his healthy liver with his little cousin. Jack called this new liver “Awesome Sauce.” The family is eternally grateful to Matty, and he and Jack are inextricably linked for all time!
Post-transplant has gone really well for Jack. He is doing well in school and returned to playing sports (non-contact). He has many friends in the neighborhood and at school. He enjoys sports, art, playing guitar and playing X-Box. He participated in the Transplant Games of America when they were in Cleveland in 2015. This past December (2018), Jack experienced rejection for the first time since receiving his life-saving transplant. He regularly gets bloodwork to monitor how his new liver is doing, and they were lucky to catch it early. This problem was managed with steroids and the introduction of an additional anti-rejection drug. They think the episode was spurred on by a virus, but once again, they don’t know for sure. He spent four days in the hospital but has been doing well since. Jack is a happy well-adjusted kid, and tougher than he even knows. He is always willing to talk about his illness and share the story of the miracle of living donation. He is loved by many, and they wish everyone who faces similar circumstances could have a similar outcome.