Correction: He was diagnosed in June of 2017. (not 2016) MRI's in June, Sept, December and upcoming one in May 2018.
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Thank you, Colleen. I will reach out to the individuals you listed. It is just so scary (fear of the unknown), and frustrating to watch, wait and see. God’s blessings to everyone going through this – brain tumor patients and their families! Yes, my son is in his second year at University, about 2 1/2 hours away from home – scary for me. He does not complain, has a great attitude, plays hockey which he loves and played since he was 4 yrs old (with the blessing of his current doctor). I do notice that there are a few struggles with school, and wonder if the tumor and location of his tumor has anything to do with that, because it does affect his left eye and I see it freeze up or lock periodically, quickly though and then back and aligned. He has found ways to compensate in classrooms, minor head movement – the brain is amazing. He is trying though and we are so very proud of him! I keep hearing these words in my head: “let him live his life,” even though I would like to wrap him in bubble wrap, and make it all go away. Peace, Love and Strength to Everyone out there!
We found out this past June 2017 that our son, 19 yrs. old, (because of double vision in his left eye peripheral when he looks right), has a non-enhancing lobulated lesion (measures 1.1 x 1.2 x 1.4 cm) involving the right inferior aspect of the tectal plate extending into the superior aspect of the fourth ventricle; relatively unchanged from both a September & December 2017 MRI’s. Doctor states that primary differential remains as stable low-grade glioma and centered in the right inferior colliculus of the tectal plate and surrounding the cerebral aqueduct redemonstrated; relatively unchanged in size and imaging characteristics in comparison to prior studies. Inferiorly it is extending into the superior aspect of the fourth ventricle. His next MRI is in May of this year. This is a wait and see prognosis.