Dayne was diagnosed with HLH in July 2007. Nov.2007, he received a BMT. He received several cell boosts to combat a dropping engraftment and is doing well. Please keep Dayne in your prayers!
We are humbled and grateful for your support!
Where do we begin?
The winter of 2006-2007 was rough for Dayne. He had multiple ear infections and illnesses. Saturday, April 28, 2007 after having a cold and low grade fever for almost a week, his fever spiked to over 103 degrees. He got on antibiotics that evening for an infection in his right ear. Monday, April 30th, he had an appointment to place tubes in his ears. We went ahead with the surgery, hoping tubes and antibiotics would resolve the situation. Unfortunately, it didn't. His fever kept climbing to between 104 and 105 degrees. We took him to our Pediatrician May 1st, 2nd, and 3rd. We also went back to ENT on May 3rd. No one could figure out why he was so sick. Our Pediatrician sent us to Connecticut Children's Medical Center Emergency Department. Within an hour, he was admitted. His liver and spleen were enlarged. He was jaundiced and dehydrated. All of his blood counts were extremely low. The doctors began looking for lymphoma and leukemia. He received a platelet transfusion and two red blood cell transfusions. We all fasted and prayed (and we know so many of you have as well). After a bone marrow biopsy, lymphoma and leukemia were ruled out, but a diagnosis still wasn't clear. Some of the specialists thought he had Hemophagocytic Lymphohistiocytosis or "HLH" (a type of immunologic disorder). Others said it was an "immune dysregulation."
What we did know was: Monday, May 7th, he started getting better. After two weeks of fever, it finally left. His liver function and blood cell levels came back to normal, for the most part. This completely stumped the 8 or so specialists working on his particular case. We know it was not a coincidence that Dayne received a blessing Sunday night, and we had so many people fasting and praying for him right before he started turning around. May 8th, he had a "high risk" liver biopsy which went well and showed nothing conclusive. May 9th, we were able to bring him home. He still had a PIC line (a cross between a central line and an IV) so a home health nurse came to show us how to take care of it.
After several follow up appointments and more blood work, everything seemed to be going well. The doctors explained that sometimes children can have an "event" like this as a result of a viral infection, and then never have a problem again. We even were able to take out the PIC line.
Some blood work was sent to Cincinnati for genetic testing to "rule out" HLH. To our great dismay, one of the tests came back as "indeterminate." He had one "bad" gene and one "unknown" gene. For someone to have genetic HLH, two "bad" genes are necessary. The doctor's said time would tell us whether these episodes would be recurrent.
We had six wonderful weeks. He even had a couple of colds that went away on their own. On July 1st our hopes for a one time occurrence were shattered. He began to get a low grade fever for no apparent reason. By July 4th his temperature was 105 degrees. Dayne and Mommy spent the majority of their holiday in the Emergency Department, while the rest of the family tried to enjoy a barbecue with friends at home. On July 5th he was admitted again, for what would be a 15 day stay at the Hospital. He was released, and we had high hopes that he would recover. Six days later, we were back. He was having trouble walking and could not move his right arm. An MRI revealed that he had many areas of inflammation in his brain. We are hopeful that the function he has lost will return.
To make a long story shorter, Dayne was officially diagnosed with HLH. This is a very rare, life threatening immunologic disorder. In a healthy individual, after a virus or bacteria is destroyed, the immune system "turns off." People with HLH lack the ability to "turn off" this immune response. Consequently, the immune system begins to attack other blood cells, platelets, the liver, spleen, central nervous system, etc.
The treatment for HLH is chemotherapy, immunosuppressive therapy (steroids and Cyclosporine), and in some cases a bone marrow transplant. In Dayne's case, a bone marrow transplant will be necessary. We have been blessed to find out that Wesley is a "perfect match" for Dayne. Wesley understands what a difficult process this can be. He is anxious to be a "hero" and help save little Dayne. We hope and pray that his treatment will be successful, and that Dayne will live a long and healthy life.
Please see the "Journal" section for updates on Dayne's progress and please continue to keep our little boy and family in your prayers.
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