I am writing about my beautiful granddaughter, Maggie. She was diagnosed with a brain tumor at the age of 3. She went to pre-school one day and wasn’t using her left hand and seem off balance. The teachers knew something was wrong so encouraged her mother to take her to an emergency room where they did a CT scan immediately.
There was a large shadow in the area of the thalamus, so Maggie was sent to Brenner Children’s Hospital. A pediatric neuro-surgeon met them in the E.R. and ordered an MRI that afternoon. That evening he showed the MRI to her parents with a large tumor in the center of the brain and the tissue around it stretched and crowded probably causing the loss of feeling on the left side.
She underwent an 8 hour surgery into her brain the next morning. Maggie suffered a stroke on her left side during surgery, and a blood clot in her brain. They used aspirin to treat the clot because Heparin might have caused internal bleeding.
Maggie went to inpatient rehab for 3 weeks in Charlotte, N.C. She couldn’t move her head or roll over and had just some movement on her right side. She also had a colon blockage that cleared up during rehab. At the end of rehab she was standing on her own, and eventually movement came back in the shoulder, and elbow, but not in the left hand. She is blind to the left side from the stroke and wears a brace on the left leg for walking. She has Botox injections every six months so she can bend her ankle to walk, dorsal flexion.
The astrocytoma began growing back and Maggie had a year of chemotherapy at Duke, receiving carboplatin and vincristine when she was five. The treatments are barbaric and inhumane, and more research is desperately needed for these tumors. The treatments have not changed much in the past 20 years.
Now Maggie has Type 1 Diabetes and her pancreas is destroyed. She had to have insulin 24 hours a day and check blood glucose constantly, in addition to the cerebral palsy from the stroke, loss of vision and regular MRIs to monitor the thalamus. She wears prism glasses to help with the double vision. She also has Celiac’s Disease with severe damage to her intestines, and must have a totally gluten free diet to help heal the lining of the intestines.
In spite of all of this today Maggie is a very beautiful, bright and capable nine-year-old due to help from several organizations. She had no cognitive damage and is an outstanding student even though she has missed over half of her school time. She is artistic, musical, verbal, and gets the absolute best out of every day using her remaining skills to the maximum. And her hair came back!
At this point, after 19 MRIs, there is no visible tumor. But more research is needed so other children don’t end up with this terrible disease of Juvenile Onset Diabetes after chemotherapy. She was given drugs to stimulate her immune system and that may have affected the onset of T1D. She is actually happy and beautiful despite everything and gives so much love to the world. I can’t imagine life without her.