On April 8, 2012, Easter Day, Kadence started having flu-like symptoms and was taken to her Pediatrician the following day. There, they said she had a virus and it should clear up within 7-10 days. Over the next two weeks, her symptoms got much worse, on the morning of April 18, 2012, she woke up vomiting blood and turning jaundice. She was rushed to Penn State Hershey Medical Center where she was immediately admitted into the Emergency Room and very quickly moved to the Pediatric Intensive Care Unit (PICU).
Doctors did not know what was wrong with her, they could stabilize her, but nothing was improving. Within 4 days, they diagnosed her with Hemophagocytic Lymphohistiocytosis(HLH) which is a rarely diagnosed disease. For more information on HLH, please visit the About HLH tab on the KJF website. Doctors decided that the only way Kadence’s condition would improve was with steroids and chemotherapy, which she would endure for a total of 8 weeks. This was the first protocol for HLH. Over the next 2 weeks, Kadence remained in the PICU where doctors monitored her with ventilators and feeding tubes. Since HLH lowered her white blood cell count, with her weakened immune system, Kadence went through many blood transfusions. Eventually she was back to a normal diet when she was transferred to the Children’s Oncology Wing at the hospital. The first thing she asked for was Chick-Fil-A, but that would have to wait until her body was ready. While in the Oncology Wing, doctors diagnosed her with EBV-driven HLH which is the more aggressive form. After celebrating her sixth birthday on May 17th, she was able to go home from the hospital on May 22nd. She would need to be taken back to the hospital twice a week for steroids, chemotherapy treatments and some overnight monitoring.
By the end of June 2012, doctors were comfortable with Kadence’s progress and decided to lower her to once a week monitoring in the clinic at the hospital since her 8 week treatment was over. They said that if her levels ever went up again, by protocol, the next step was a bone marrow transplant. In July 2012, the EBVirus level rose again, which caused the HLH to reappear. To prepare her body for a bone marrow transplant, they needed to lower the EBV levels by more chemotherapy and steroids. She was able to be home from July 26-August 16. When Kadence was readmitted, the doctors tried some of the stronger chemotherapies but sadly the virus and HLH grew stronger. She started having seizures on August 18th, losing some mobility. At first, doctors thought maybe the seizures were caused by the new intense chemotherapy, but after her suffering a brain hemorrhage on August 21st, they realized that HLH had spread to her spinal cord and brain.
The Pediatric Neurologist said that it was the worst brain hemorrhage that he had ever seen in his whole career. With surgery, she had a less than 1% chance of survival, which even if she beat those odds, her quality of life was not guaranteed and she would still not be able to get the bone marrow transplant to treat her HLH. On August 23, 2012, after making the hardest decision in the world, she was taken off life support.
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