Adelia was diagnosed on 2/27/2023 with diffuse midline glioma. She has been through almost 63 rounds of radiation, 4 brain surgeries, and countless other procedures. She was doing very well for the first 8 months, and then the cancer spread to her brain stem and she lost function in her left arm/hand, and has trouble with balance and walking. Last month, we found out that the cancer spread to her spine, and she is currently undergoing radiation. We are hoping to get her to the CAR-T trial in Seattle in mid-April, the soonest she can go. Throughout it all, Adelia has remained fearless, optimistic, and in good spirits. She never complains and takes everything in stride. She is an avid reader, devouring many books a week, loves school, crafting, painting, cooking, and her little sister Esme.
We thought Adelia had the stomach flu, and she had been in and out of the ER with treatments of Zofran and IV fluids. Her symptoms presented extremely rapidly, over a few days. We took her to a different ER finally did an MRI and found the golf ball-sized tumor in her brain. We were ambulanced up to Boston Children’s for emergency surgery. Looking back, there were subtle changes that we should have picked up on but didn’t know any better. Two weeks prior, she had her annual visit with her PCP and she said her vision was blurry on the vision screening, but could still name all of the letters accurately. She was probably having double vision then but didn’t know how to articulate it. The day she was diagnosed will always mark a before and after in our lives.
Hope session by Caitlin Matte Photography | Facebook | Instagram