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.
