Grace Hodges
8/28/01
5 years old at diagnosis
Las Vegas, NV
Sunrise Children’s Hospital

Grace had been having pain and fatigue in her legs for over a year, but we didn’t pay any attention to it because kids often complain about small aches and pains. 

Then, she became incontinent of her bladder and bowels.  It started out as once a week or so, but gradually progressed to several times a day.  Initially, we didn’t worry too much about it because I was pregnant at the time, and we thought it might be due to the stress of the changes taking place in our family.  But when it progressed to several times a day, we knew it was time to take her to the doctor. 

The doctor thought she had a mild form of spina bifida called Tethered Spinal Cord, and ordered an MRI.  During the MRI, they instead discovered a tumor in her spine that came out of the spinal canal and pressed on her right kidney. 

She was immediately admitted to the hospital and had her first of 3 surgeries the day after Thanksgiving.  Having a newborn baby and dealing with the world of childhood cancer put a huge strain on our family and changed our happy-go-lucky girl to someone who was moody and afraid of strangers.  She had never minded doctor or dental visits prior to her diagnosis, but eventually reached a point where they had to sedate her just for a dental cleaning. 

She has had no evidence of disease for almost 3 years, but we were told she has a 20% chance of relapse.  I worry about every ache and pain she has, and probably always will.

Grace is an avid reader, collects Webkinz, and wants to be a veterinarian when she grows up.