NOTE FROM THE MACS STAFF

Savannah's story has NOT been updated yet since she passed away on April 30th, 2004. We will update the end of her story as soon as we receive more information from her family.

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Savannah's Story
written by mom Lisa

Savannah was born on March 9th, 1997. It took me three months on my back to get her here. Big sister Cassandra (Cassie) was a preemie. Savannah was little but beautiful at birth. Her sparkling blue eyes remained with her, but her hair changed from blond to red.

At two weeks she developed a fever and was hospitalized. Nothing was found. She suffered from ear infections until the age of four when her adenoids were removed. She got chicken pox at one year of age. Other then that, never sick.

She thrived. Savannah was quite normal in every respect. She was extremely articulate and had a creative imagination. Her quips would have children and adults rolling alike. The world was to be hers.

Two months into kindergarten, she began to have trouble. She would zone out, yell for no reason, spend lots of time attempting to use the bathroom, and the quality of her work plummeted. Her teacher suggested we have her tested for ADHD. The next day she was ataxic. First diagnosis, massive middle ear infection. However, she lost her fine motor skills at an alarming rate. Second diagnosis, Acute Cerebellar Ataxia. Her pediatrician contacted the Children's Hospital. They wanted to rule out a brain tumor, so the following day she had a MRI. It showed a large lesion in her brain stem. Third diagnosis, inoperable Diffused Pontine Brain Stem Glioma. Our world collapsed. This was the end of October 2002. She was supposed to grow up and be a neurosurgeon, not fight to make it to the age of seven. She and her sister were going to be life long best friends.

Savannah was never the same after the sedation from the MRI. Immediate radiation and high dosage of steroids were required. Within the next month she presented facial paralysis, left sided weakness, difficulty coughing and urinating, severe thrush, and she could not stay in a sitting position. You had to tell her to chew her food and then to swallow. What happened to my baby? My dreams for her and her sister? Chemo began in January and continues today. She has tolerated that extremely well. These children are stronger and braver then any adult I have ever met.

It was not until I forced steroid weaning that she began a long road to regaining her former self. The steroids took their toll on her little 40 lb frame. She swelled to almost 60lbs, could not rest or be still, got colds which took forever to get over, developed large kidney stones in both kidneys which cannot pass, her personality became flat, could not smile, and could barely walk. The list went on. During this time Quality of Life became my driving force. Regardless of the time allowed to us, I owed a lifetime to my daughter.

She returned to kindergarten after a 5 month absence. I never thought she would make it back. I am so thankful that I was wrong. Her school and class accepted her with great love, tenderness, and support. She takes PT and OT after school.

Her muscles are slowly getting stronger. She no longer sees double, her hearing has returned, her words are no longer slurred, she can almost walk a straight line, and has regained her fine motor skills. Her latest MRI shows new enhancements away from the brain stem. The doctors do not know what they are. Possible radiation necrosis or new tumor growth. But she remains stable at the moment. And every moment of health is a gift.