Gunner had slight tremors and deterioration of eyesight, all in one day. We went to the pediatrician and ophthalmologist then straight to the ER and into PICU. We found out he had low grade glioma on his optic nerve and surrounding his hypothalamus. That was quickly followed by a 28 day hospital stay and multiple brain surgeries. He is currently on his 5th protocol. The current treatment is an oral treatment. It is fairly new so we are still learning the effects. He has a wonderful attitude but gets tired and grumpy at times. Blood draws are hard. He has anxiety about port access. We are working through all of this.
His tumor has left him visually impaired, so that is a big obstacle he is faces. He is in school now so we are learning how to teach him as we work with his abilities. He is very smart and it is frustrating for him sometimes. We also deal with anxiety and endocrine issues due to his tumor location. He also has a VP shunt to help relieve the pressure from the hydrocephalus caused by the tumor. But he is the bravest and coolest kid we know and he will be just fine.
His tumor has completely turned our world upside down emotionally and financially and really in every way possible. It effects all of us…Gunner, his sister, my husband and myself. Our focus is healing him and that trumps all things, as it should. We dream of a day that he can be off treatment and have a break. We have learned to have a new normal and find joy in the blessings we are given.
Hope session by Amanda Joann Photography