Our Emily went to her new home two years ago on January 11, 1999. She was 11-years-old and in 6th grade. Her birthday is February 6th and she would have been 14-years-old this year.
Let me go back to the day she was born. It was a difficult delivery and we almost lost her then, but the Lord let her live so we could have her with us for 11 years.
She was the youngest of five girls, Becky, Margie, Katie, and Rachel. They all loved her so even though Katie loved to tease her and say, “You know mom and dad got you at Kids R’ Us and they still have the receipt and can take you back anytime.”
It was in May of 1997 at ten years of age that Emily was diagnosed with a cancerous brain tumor on her brain stem. I could hardly believe it when the doctor told us. I kept thinking this is a bad dream and please, Lord, let me wake up. It was such a roller coaster ride for 20 months and through it all Emily was so brave. She never liked pain very much; but whenever she had to have something done to her that would hurt, she would never complain. She had two Hickman’s (central lines) put in and neither worked right and on top of that, it was hard to draw blood from her veins. They were very tiny (like her mom’s) and sometimes would collapse.
She went through various treatments, but in the end the tumor took over. She had different chemotherapies, but they only seemed to make the tumor grow. She had radiation, but the amount is limited that can be given in the brain stem area. That slowed things up for a while.
She had surgery in New York with Dr. Fred Epstein. Of course, we knew in the brain stem area that he could only go so deep without doing major damage.
Then she had photodynamic surgery. A dye called photofirn is injected into the tumor cavity. The dye heads for the bad cells and then a laser light is put by it and the bad cells die. Again, the laser light could only go so deep and wasn’t able to kill all the bad cells. I understand now a more intense light is available for this procedure.
So through all this I can see there needs to be more dollars for research in the area of helping children with inoperable brain tumors. Children should not have to suffer through this terrible disease.
Since Emily has gone, we have had one daughter graduate from high school, two daughters get married and we have celebrated other holidays without her here with us. When I look at pictures of those special days, they never seem complete because our Emily isn’t there. We only have the memories of her that now live on in our hearts.
Written by Sherry Mau
This article was written for The Childhood Brain Tumor Foundation, Germantown, Maryland.
