Dana Raabe, Gliomatosis Cerebri

5 Years Old at Diagnosis

Dana RaabeIn 2003, 5-year-old Dana Michelle Raabe was watching TV one Saturday morning in late November when she stopped speaking and collapsed on the floor before her mother’s eyes. Rushed to the emergency room, Dana was diagnosed as having had a seizure and referred to a neurologist. The neurologist told Dana’s mother, Janet, that everything looked OK, but that he would wait for the MRI results. The weekend of Thanksgiving, the doctor called and referred Dana to a neurosurgeon at Miami Children’s Hospital. There, she was diagnosed with gliomatosis cerebri – a high-grade brain tumor.

Over the next 4 1/2 years, Dana underwent radiation for three months straight, had four brain surgeries, four chemotherapy treatments, and endured countless MRIs, CAT scans, and blood draws. “She had endless seizures,” says Janet. “We spent many, many nights at the hospital. Dana had occupational therapy and physical therapy. She took 8 pills in the morning and 12 pills in the evening, every day,” Janet recalls.

Janet and her husband, Jerry, went through things they never could have imagined. There were several more emergency ambulance trips, one of which was via helicopter. There were medical procedures and side effects. “My world as I knew it was ending, however, my new world, the one with a terminally ill child, was a world I never knew existed on this level. I was seeing such horrible things – and I already had two teen-aged girls so Dana wasn’t my first child.”

And then there was the point, in 2007 when Janet and Jerry were told it was time to discuss hospice. “Hospice? Do we really have to talk about Hospice? How wrong on every level,” she thought. “Hospice is for the elderly, not for children. I still had hope. There’s always hope.”

Dana RaabeBecause Dana was so young when she was diagnosed, Janet and Jerry weren’t sure how much their daughter understood about what was happening. They wanted to protect Dana. “I never wanted her to be scared. And I never ever wanted her to know she may die from this.”

Of course Dana knew she was sick. She didn’t like it when she lost her hair – four different times from chemo. She didn’t like it when she had headaches. She didn’t like it when she had to get needles. She didn’t like it when she had to take so many pills every day. She didn’t like it when doctors removed all the bone from the left side of her brain and she was left with an indentation on her head.

But Dana loved going to see her doctors and nurses, going to school every day and going to see her grandparents. She loved seeing her sisters and her nieces. “She loved people!” says Janet. “Dana would smile and talk to anyone she could. She always said ‘hi’ to the neighbors and would run up to them and hug them. She loved going shopping and going out to eat. She was my joy, the love of my life.”

As Dana’s disease progressed, she wanted to stay home more. She would watch cartoons, do jigsaw puzzles and word searches, and play board games and cards with her family. She went to school as often as possible.

Then, one day in February 2008, Janet got a call from the school nurse that Dana wasn’t doing well. “Everything the nurse described to me was exactly what the doctors had told me would happen. I picked her up from school and got her home, to her sanctuary, where she wanted to be.”

It has been three years now since Dana passed away. The only difference between now and then is that now, Janet says she can function without crying all the time. “I can put my thoughts and memories of Dana out of the forefront, but they’re still there and always will be. I look at children differently. I look at parents and families differently. I look at life differently.”

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