Nevaeh R. - Quilt Finished in 2007
Born: May 16, 2002
Illness: Anaplastic Ependymoma Brain Tumor
Nevaeh's Story
Written by Nevaeh's mom Erin in August 2006
Nevaeh was born a healthy 7 lbs. 2 oz. baby girl on May 16, 2002. She was our first baby so we were thrilled! She was always a happy and smiling baby. Nevaeh was born with a heart shaped birth mark on her head and everyone said that meant she was gonna be special. I knew she would be special but NEVER did I imagine why she'd be so special!
In November of 2002, my husband fell ill with a gastrointestional virus, he was so sick for weeks until he was admitted to the hospital. For 5 day's Nevaeh was having the same symptoms as her dad. She was vomiting, sleepy, and miserable! I decided to take her to the local emergency room where I work. I was afraid she was going to get dehydrated. When the doctor on that night examed her she noticed that she could not look up with her eyes and her soft spot was buldging. They immediatly Life Flighted her to Children's Hospital of Pittsburgh, PA. There they did a CT scan and found a very large tumor on her cerebellum. She was rushed in to surgery a few hours later. The surgery lasted approximatly 9 hours. The surgeon removed 85-90% on the tumor, there was so much blood and swelling it was uncertain how much was removed. She spent a few day's in the intensive care unit and then a few day's after that she was released from the hospital. She was only 6 month's old at diagnoses so, the plan was to give her a low dose oral chemotherapy to delay the need for radiation until she was older, she need to be at least one.
Everything was going great with her. She was bouncing back quickly from the surgery. The chemotherapy was going good and she was only occasionaly getting sick from it. Then in March of 2003, she had a follow up MRI scan that showed the tumor had grown back to it's original size. It had only been 3 1/2 month's since her last surgery so the tumor was aggresive and growing quickly even with the chemo she was getting. She then again had another surgery only this time all the tumor was removed! At this time she was 10 months old. The plan then was to give her high dose chemo to keep the tumor from growing back until she was one. Later in the week she had a external shut removed from one of the ventricles and they hit a vessell and caused a bleed in her brain. So the doctors did not want to give her the chemo be cause the bleed could get worse. They then decided that the next thing to do would be to go ahead with the radiation therapy earlier that planned even though she was only 10 1/2 months old.
Nevaeh recieved 6 weeks of conformal radiation that ended 2 weeks before her first birthday. She is now 4 years old and a very healthy little girl. You would never know she was so ill as a baby. She has frequent MRI scans to make sure the tumor is not growing back and she will have MRI's for the rest of her life! She has no delay's or deficiet's from all the treatment she has had. She continues to amaze her family and the doctors. We are now over 4 years out of treatment, all of her MRI scans have been clear and tumor free.
We all know that she is NOTHING short of a miracle.
