Help Ethan fight LCH and get through chemo

Ethan was born on January 6, 2009. On November 29,2011, a few weeks before Ethan was to turn 3 years old, our world was turned upside down. After multiple visits to the pediatrician for a puffy eye, we were sent to St. Joseph's Children's Hospital for an MRI that revealed a tumor above Ethan's left eye. Following this discovery, we consulted with the cranial-facial plastic surgeon who would eventually remove the tumor. He ordered a CT Scan for Ethan so that he could get a better idea of how involved the tumor was with Ethan's skull, eye, and brain. Due to the location of the tumor, it was determined that we would need a neurosurgeon in addition to the plastic surgeon; we also realized that due to the proximity to the brain and eye, we could not biopsy the tumor prior to surgery, which lead to wide speculation of a diagnosis. From the realization that surgery was a necessity, the plastic surgeon wanted to schedule the operation ASAP in order to protect Ethan's eye. Unfortunately, due to hospital politics, he was unable to schedule the surgery with a neurosurgeon that he was comfortable working with, so we were referred to the University of Miami. On December 6, we arrived in Miami. We stayed in Miami for 5 days and consulted with multiple doctors and ran more tests. Following more speculation, surgery was scheduled in Miami for December 30, 2011; it could not be scheduled sooner because the neurosurgeon was going on vacation for Christmas. In the mean time, our doctor in Tampa was still working around the clock and calling in favors in order to schedule the surgery in Tampa sooner than December 30 as he did not want to risk allowing the tumor to jeopardize Ethan's eye. We were sent home to wait until the end of the month and told to "enjoy the holidays." It seemed that the roller-coaster was never going to end. On December 16, we got a call that our doctor in Tampa, after exhausting all of his favors, was able to schedule Ethan's surgery in Tampa for December 22, 2011.

The surgery was a success and the tumor was completely removed. Ethan was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare cancer-like disease that affects 1:200,000 children. While the diagnosis could be worse, this is still a serious disease with no government funding available for researching a cure. Ethan will be starting chemo during the first or second week of January, possibly on his 3rd birthday, and the next six months will be difficult as we begin the journey of beating this disease.

On September 27, 2011, our family was blessed with the addition of Liam, Ethan's younger brother. Melissa and I have used all of our available sick time through June 2012 with the leave that we took following Liam's arrival, making it difficult for us to be off of work. However, Ethan needs us around as much as possible, especially Mommy, over the next 6-8 weeks during his first round of chemo and during any future treatments. We are trying to raise money that will help with the costs of Ethan's care so that we can keep our focus on keeping his spirits up and beating this disease. Asking for and accepting help has been one of the most difficult things that we have done, but we need any and all help that you can provide. Anything helps and please repost this page wherever you think may help. We truly appreciate any and all support. Please keep Ethan and our family in your prayers as we begin our battle. Any money raised that is not used in costs associated with Ethan's treatment will be donated to help educate and/or research LCH.
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Organizer

Melissa Robinson Haas 
Organizer
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