Ethan Allan Simas was born on July 20th, 2003 at 11:36am weiging in at 7lbs 19and 1/2 inches at Woman and infants in Providence RI. He passed away the morning of September 11, 2005 at the age of two years. Ethan Loved everything and everyone. Especially his Elmo. He would watch it from morning to night. He loved everything that is Elmo from the movies to the toys and books. He loved his nurses also, he wass a big flirt for just a little boy. His favorite nurses were the blondes although he loved them all. They were all drawn in by his beautiful blue eyes and his smile. The thing is he knew he is was gourgeous and he used it against us.
Ethan moved to FL in November 2003 at age 4 months with his mother and father to start out on a journey and a start at a better life. Unfortunately that was cut real short when Ethan was diagnosed on Feb 27, 2004 in Vero Beach FL. Ethan was having trouble sitting up in the past few days and was brought to the hospital once for a Febal seizures or what they thought to be a Febal seizure. At the time he was brought in the first time they sent him home because he didn't have medical insurance. The second time he was referred to the ER by a clinic. They took cat scans and came in with a social worker to tell my sister he had a brain tumor. They did not have the resources there to handle the situation so they were going to airlift him to Orlando Children's Hospital. Because of weather they had to transfer him by ambulance to Orlando. Some how during the ordeal my sister had time to make a phone call to me that would change my life for ever.
I was still In Ma going to school when they moved to FL. I wanted to finish so I could help provide a better life for Ethan. Well I had no idea what was in store. The moment I got the phone call I was on the next flight to FL not knowing if I would make it in time. The doctors had said that he wouldn't make it to Orlando. At the same time my sister Christy her grandmother Doris, and Ethan's dad Charlie were following the Ambulance as it made its way to the hospital. When they arrived they went through the whole checking in process and started the first night of many more to come in the PICU. Arriving the next afternoon, I found my little man lying in bed looking nothing like I could remember just a month earlier. But still through it all he managed to smile. On March 1st Ethan underwent his first resection to remove as much of the tumor as possible. After eight hours of seemingly stand still time, the doctor came out and pulled us into the consulting room. The surgery didn't go so great they were only able to remove 30 percent of the tumor. However they said that it looked to be Pilocytic Astrocytoma, which if you would want a tumor that would be the one you would want to have. We were so relieved but there was something that wouldn't go away just a feeling.
The biopsy came back a few days later and it showed to be a stage II Ependymoma brain tumor, which there is no cure for. We started on protocol 1 and that lasted until right before his 1st birthday. During that time he underwent many other surgeries a G tube feeding placement a central line. He is a true fighter never stopped smiling. During that time Ethan's dad had to travel back and forth to Vero Beach and work so we could try and make ends meet. They didn't want to give up their home. They wanted to bring Ethan home when he was better. After a while we realized that he wasn't going to just go home so we started working on getting an apartment. At the time it was my sister, myself, and Charlie (Ethan's dad) staying in a small Ronald McDonald room near the hospital. It was small but not so bad because every minute of the day we would be at the hospital with Christy and I alternating nights there. Ethan got to come home just after Easter we brought him to the RM house and then had to start looking for apartments in the Orlando area. It was hard to do seeing as I was the only one working and I had just started at the BRU in Orlando but somehow we managed to make it happen and we got to moved in to our beautiful apartment. We had just hung the last photo on the wall of our apartment when we got the news that the tumor had grown slightly and we had to stop his chemo. In Orlando there was not much they could do. Doctor Scott from Boston Children's Hospital said that he thought he could remove the tumor after looking at the MRI scans. He couldn't make any promises but anything was hope.
Christy and Ethan packed up and moved back North within a few days of the news. I had to stay for a few days and finish working and clear some thing's up. Charlie tried hard but couldn't handle the stress of having a sick child and everything that came with it. On August 31, 2004 Ethan underwent another resection. It was supposed to take 10 hours or so depending. I had a very bad feeling about this one and after just four hours the doctor came out. Again we headed to a conference room and we just sat around and listened as he said that he was only able to remove a cyst and take out a very small portion of it not even enough for the biopsy. We started to talk with Dr. Kieren about Chemo options. We started him on a clinical trial involving Thalidamine and Temador and Ethan did very well with it. Right before Christmas we got the news that the tumor had shrank a little bit. It was the best gift we could have ever asked for. But it didn't last long, the tumor by February had stopped reacting to the meds so we continued on the chemo because it was at least containing it. We were hoping for the best. In July, right before Ethan's big birthday bash thrown by the Make-a-Wish Foundation, we got the news that Ethan's tumor had grown 25 percent since the last MRI. We were in shock. I wanted to die inside but we had to stay strong for Ethan and the fight ahead. We only told a few people we wanted to save the pain till after his birthday party celebration. We went ahead with his birthday party. He was king for the day and he had Elmo there, he had a blast. We headed to Boston to talk about other trial we could go on. We started another study involving Thalidamine Celebrex, Tricore, and alternating from VB 16, to Cytoxine. Within a week from starting the second trial we ended up in the hospital. Ethan didn't want to wake up, he wouldn't wake up and when he did it was only for a few moments. They started him on Steroids and admitted him to the PICU. In the following days he underwent numerous tests including the dreaded MRI. We waited holding our collected breath in anticipation of the results. I was headed for the elevator as I rounded the corner I saw Dr. Manely, Ethan's Oncologist. Just by looking at him I knew. I asked him if they got the results and he shook his head yes. I asked if it was bad again he shook his head yes, I asked how bad and he said it had doubled in size in just three weeks. I asked how much time we had. He shook his head and took his glasses off. I just said thank you and went on my way. I was in shock I think. I mean I did know but I never wanted to believe it. We want to thank everyone at Orlando's Children's hospital especially Dr. Hajjar and his team. Also, thank you to the RM house in Orlando, to Josh Hendrex, to everyone at the Tomorrow and the Jimmy funds. A special thanks to Dr. Peter Manley who works very closely with Ethan to this day. And to all our friends and family who makes it possible for us to get through everyday. Donations are not expected but if possible they would be greatly appreciated to cover expenses and also donations for brain tumor research to save even one child from this. Contact "The Miracle Kids" for additional information regarding much needed donations.
Status
Updated: September 12, 2005
"...and pray for each other so that you may be healed.
The prayer of a righteous person is powerful and effective." James 5:16It is with deepest sorrow that we announce that Ethan passed away on September 11, 2005 at Hasbro Hospital. His Aunt Alicia was holding him when he started to take his last few breaths, then he laid in bed with his mom and his aunt and he went so peacfully. I add thank you to Everyone at Orlando's Children's hospital especially DR Hajjar and his team and also the RM house in Orlando to Josh Hendrex thank you so much. To everyone at the Tomorrow fund and the Jimmy fund especially DR Peter Manley who works very closely with Ethan to this day. And to all our friends and family who make it possible to get through everyday. also Donations are not expected but if possible they would be greatly appreciated for final expensive and then donations to brain tumor research in hopes to save even 1 child from this. Sincerly, Ethan Allan Simas
MAY GOD BLESS THE CHILDREN !