Here is a beautiful story that Alyssa's mom wrote for us. What a special girl she is. Alyssa, is now 8 years old. Alyssa was just three when she was diagnosed with leukemia. A year into her treatment she developed a virus in her brain. She became very sick and was in a drug induced coma for 5 days. When she finally woke up nobody knew what to expect. Alyssa could not speak, she could not walk and days later it was confirmed that she had permanently lost her sight. Alyssa had to relearn how to talk and walk but her right side remained weak and she has very limited use of her right hand. About three month's after Alyssa was released from the hospital she started to have seizures. On a good day she would have three or four seizure, on a bad day she could have up to thirty in an hour. About a year and a half after Alyssa lost her sight she finished her chemo treatment and was declared in remission. Normally this would be a big celebration but due to her uncontrollable seizures we wondered how long her little body could take it. This is when we sought out a surgical cure to Alyssa's seizures. Doctors at UCLA recommended removing Alyssa's left hemisphere of her brain. While we never had heard of such a thing we knew we had to take a chance to find a cure for her. In November of 2010 Alyssa underwent massive brain surgery, her doctors ended up removing two thirds of her left hemisphere in hopes of keeping her communication skills intact. Alyssa had another long recovery ahead of her. She had to learn to talk and walk again but this red head was determined to survive. Her last seizure was in May of 2011. The surgery has worked. We are now reducing her seizure meds and everyday I see pieces of the little girl that was taken away from me return. Alyssa can walk and talk, she can do simple math and is learning Braille. Alyssa also knows has a service dog named Flint, he helps her with mobility and various other things that he was trained for. Alyssa has an amazingly funny personality and even though her sight is gone forever she see's more clearly than anyone I know. During Alyssa's many stays at the hospital her only entertainment was the playroom. She especially looked forward to Thursday's as that was Discovery Arts day. She couldn't wait to go down to pick out a costume or to do a special craft. The days when she was too sick leave her room she would always ask "do I still get my costume?" but the women would already know that she was sick and they would have picked one out for her. We have dozen's of pictures of Alyssa dressed up in different costumes and her smile was never bigger than on the days she was a princess or a fairy. Hospital life is hard on everyone, especially the patient, but Discovery Arts offer a little escape from reality! ~ Alyssa's Mom
11 Comments
We are celebrating with Jilly and her family and friends for a very special day on Sunday June 2, 2013. It's as good as another birthday ... We are so happy to share this special day with her as she has been Cancer Free for 5 Years! Jilly was a patient who we got to know very well during her stays in the hospital and we couldn't be any prouder to hear the good news! "She LOVES Peter Pan and was one of our patients who we sponsored to go see Cathy Rigby at our Peter Pan Event! As part of her 5 year cancer free party they are doing Bedside Adventure Kits to help the other kids in the hospital... Love does wonderful things doesn't it? Precious precious girl!", says Discovery Arts' Executive Director Marilyn Clements. Congratulations Jilly ... from the entire Cast and Crew at Discovery Arts. We all Love You!!! |
Discovery Arts
Bringing the healing power of the arts to children who are in the hospital undergoing treatment for cancer or life-threatening illness. Archives
August 2019
Categories
All
|