Lorelai was 10 when she started having trouble in school. She wasn’t hungry, so didn’t each much. She got headaches every afternoon – so bad that she couldn’t stay at school. She was so tired, she’d nap in the afternoon for two hours, and still go to bed at 6:00 p.m. We worked with teachers to address issues at school, we changed her diet, we encouraged exercise. Nothing worked. The doctors kept saying she was fine. So, deciding she must get migraines or can’t see well, we took her to the eye doctor. He found that she had a vision block in both eyes – she couldn’t see anything to the right of her peripherally. How did we not know this? He sent us for an MRI. Within minutes of the exam, they had us on the phone with an oncologist. WHAT?! They told us she had a brain tumor and we were scheduled to meet with the neuro-oncologist at 9:00 a.m. the next morning. Craniopharyngioma is very rare. Lucky us. Lorelai had brain surgery in May 2016, and radiation all summer. While we have been told that this is a lifelong battle for her, the tumor is incurable and not removable, as of today, the tumor is finally shrinking. Her hypothalamus is all but destroyed – her body doesn’t produce hormones properly if at all. But, we take everything one day at a time. And, we are so grateful for all the people we have met that help us remember that we are not alone. Everyone we meet, through Shining Stars, HopeKids, Make-a-Wish, and now Miracle Party, remind us that we have it pretty good and help us through our bad days. Support is everything! Lorelai is here with us and we plan to have her here for a long time to come.
- Our Heroes
- 2019 Party