June is 4 years old and was diagnosed with Choroid Plexus Carcinoma, a rare brain cancer, in March 2021. She started out having balance issues and trouble walking. Her pediatrician gave her a referral for a specialist in Knoxville. The specialist diagnosed her with a gross motor delay and advised she do physical therapy and prescribed her a leg brace. Her walking got worse and she developed issues with her eyes darting and a lazy eye. Her pediatrician basically brushed all of our concerns off and said she should see an eye doctor. We even asked her if it could be something with her brain. She said no. If you googled all of her symptoms, it would point you to brain tumor, but that's a parents worst nightmare. We never thought that's what it would actually be. February 16th, 2020, she complained of a headache after church and was acting different. A trip to East Tennessee Children's Hospital ER, revealed in a CT scan she had two tumors. One of the brain stem and one on the top of her brain. An MRI revealed 4 more smaller tumors in her brain, some inoperable and then tumors smeared up and down her spine.
They placed a drain in her head to drain fluid a couple days later and then February 20th, she had her first surgery to remove the brain stem tumor. The neurosurgeon got all of it except a sliver right next to the brain stem. She had to learn to walk again and regain some motor skills but thankfully, it didn't take too long. After recovering from that surgery, she started 4 cycles of chemo. The end of July, she had surgery to remove the large top tumor. They were able to get all of it. She still has tumors left in her brain and up and down her spine. She is starting 2 more cycles of different chemo meds because the first 4 cycles didn't go anything for her tumors, sadly. She will more than likely start radiation after these 2 cycles, assuming her oncologist doesn't find another treatment plan she thinks will work better.
She also has Leptomeningeal disease which means that her original cancer has spread to her spine and is in her fluid. That in itself is a problem.
She lost all hearing in her left ear because of the effects of one of the chemo meds from her first two cycles she did. She wears a hearing aide in the other ear and seems to be hearing okay.