by: Lynn Carle
November 18, 2010 was the happiest day of our lives. We had finally received our miracle, a beautiful boy named Ethan Thomas Carle. As we held our precious boy, both Tom and I proclaimed so many hopes and dreams for our family. We knew Ethan was destined to do great things….what we never expected was for him to do those things from heaven.
From the day we brought Ethan home, he just thrived. Born 4lbs 7 oz, he quickly doubled his weight and was doing wonderfully. Ethan was perfectly normal and healthy and before we knew it, he was cruising around the house and ready to take on the world. Ethan quickly stole the hearts of everyone he met; he was the most joyful baby and just loved to be around people and play. As the months went by, Our little “champ” continued to amaze us with his energy and attitude. Each day we were reminded of how blessed our family was. And no matter what was going on in our world, we were always happy and life seemed perfect. Until April 21, 2012…..life as we knew would be shattered.
The day started out as normal as ever, we spent the morning outside enjoying the nice weather. Ethan was having a great time laughing and playing. But at 4pm, all of that changed. Ethan suddenly became pale and spiked a fever of 105. Within a week, he went from a completely healthy 17 month old to being on life support. He was diagnosed with a devastating disease called HLH, Hemophagocytic Lymphohistiocystosis.
For the next three weeks, Ethan would be in three different hospitals Ethan had been to the local ER twice and had numerous tests, including a full blood lab. All of those tests came back normal. After two days he was no better and it was apparent that this was something much more than a virus. He was admitted for testing on Thursday the 25th, except now all of his labs, which three days prior were normal, were now abnormal and his enzyme levels were indicative of acute liver failure. He was sent to the Janet Weiss Children’s Hospital in Danville for further, more advanced testing. No one could pinpoint the cause of Ethan’s deteriorating condition. The team at Danville conferred with CHOP, who based on the clinical presentation, ordered a ferritin level drawn. The results of that lab would confirm their initial diagnosis of HLH. We flew Ethan to Philly where he was to undergo 8 weeks of chemotherapy and steroid therapy. Our family had been thrown into the cruel world of histiocytosis, a disease we never heard of, let alone understood-- initially. What we learned was terrifying, traumatic, and heartbreaking. How could our son go from being completely healthy to life support within a week? After a day in the PICU, Ethan was put on a ventilator for respiratory support. His liver and spleen were so swollen, coupled with the excess fluid, that his lungs became compromised. Two days later he needed to be put on dialysis to help rid the excess fluid.
Ethan had his first two doses of chemotherapy and there was evidence that the HLH was starting to respond to the treatment. Liver enzymes had started to plateau and his vitals remained stable. We were cautiously optimistic that we would beat the acute phase and were preparing for a bone marrow transplant. However, On May 6, we learned that blood cultures from the 4th started to grow fungus; Ethan now had no immune system and had to fight off a fungal infection of the blood. After countless blood products and line replacements, the infection proved too much for his little body to handle. On May 9, 2012, as I had done every night, I rocked and sang him to his final sleep. Our “Champ” earned his angel wings and lost his battle with HLH.
Our family is committed to continue the fight Ethan could not. The Ethan Carle Memorial Fund is being established to raise awareness of HLH and other Histiocytosis disorders as well as fund research for these diseases. Because histiocytosis disorders are classified as “orphan” diseases, they get no government funding. All research is funded through the private sector and by non-profit organizations such Liam’s Lighthouse, whom we are proud to be partnering with. Liam’s Lighthouse has already made an impact on the world of Histiocytosis. Together, we can do even greater things.
We have had and continue to have a great support system, and want to pay it forward. If we can help one other family, or fund one new test, then we will have made a difference.