In January 2012, Connor Jones was diagnosed with stage 3 non Hodgkins Lymphoma and was put on a strict regimen of chemotherapy which would continue out until April 2014. His mother, Kylene Johnson, put life on hold to take care of her son taking him to various appointments and staying with him at all times. The chemotherapy was working wonderful and Connor handled it like a champion. He rarely complained and was so brave when it came time to get his treatment.
In July of 2012, we found out the chemotherapy had done amazing work and Connor was cancer free in just 7 months. Connor still needed to get treatment done but not as often and was even cleared to go back to school. He was so excited and was doing well in school. He was so eager to learn. He was far beyond his years. His mother was able to start a new job and while she and Connor’s father figured out a good schedule, Connor was staying with his grandparents in Jacksonville, NC.
One night Connor showed signs of a fever and was taken to the ER in Jacksonville. The next day, he was brought back to Charlotte to see his doctor here. Since he had a fever greater than 101.3 he was admitted to the hospital at Presbyterian children’s hospital. Connor continued to get worse over the next several days and was put on a ventilator after his lung collapsed due to his liver swelling. Connor needed to be put on a more powerful ventilator that Presbyterian didn’t have and was transferred to Levine’s children hospital. He was successfully put on the oscillator and would remain on this for a few days.
In those few days the doctors thought Connor had a very rare condition called HLH (hemophagocytic lymphohistiocytosis) based on his high liver enzyme numbers and several other things. HLH is extremely rare only affecting 1 in 150,000 people. The diagnosis of acquired, or secondary, HLH is usually made in association with infection by viruses, bacteria, fungi, or parasites or in association with lymphoma, autoimmune disease, or metabolic disease. Since Connor had lymphoma and was still on chemo, his immune system was not able to fight this.
Connor was put on so many medicines but since everything is processed through the liver and the liver had basically failed at this point, Connor only continued to get worse. Connor passed away on March 27th this year and he is missed every day. We were able to keep him alive for 4 weeks and have more moments with him, most of when he was asleep. He did wake up and we got to hear his sweet voice a few more times before he took a turn for the worst.
Not many people know about HLH since it is so rare and we are determined to help the histio organization to find a cure. If you would like to donate in Connor’s name you can go to histio.org and donate in Connor Jones’ honor.