Kimberly Hirsch-Mennicucci

An unbearable 3.5 year journey with Glioblastoma in 68 year old dad.

My dad was diagnosed with a glioblastoma in Sept. 09 at the age of 68. The tumor was on the left side of his brain directly on the part that controls speech.  We were told it had to be removed immediately because of swelling.  His team of doctors from NYU were wonderful and never gave up on him.  He spent two months after that surgery learning how to speak, write, and walk again and regaining the use of his right hand at home.  He also went to radiation every single day and took chemo pills.  Not to mention the horrible emotions, anger and depression he suffered, as well as side effects of chemo and going in and out of ER for various reasons. I took a leave from work and my sister and I spent everyday caring for him, finding someone to care for him, being his voice and advocating for him while also taking care of my own child and spouse. Everyday was a new learning experience in nursing and psychology. These 2 months were unbearable!  A man who was on a water slide with his grandson in July had lost most control of his body and mind 3 months later.  On Christmas Day he developed an infection in his leg and all he gained in walking was lost.  He went into a rehab center.  Not a good one unknown to us.  By January 2010 he had lost all hope and motivation.  He felt the inevitable was that he would die anyway.  After having a blood transfusion, he decided he was done and would enter pallative care, thinking he would be gone from his misery in 3-6 months. He spent ONE YEAR at pallative care hospital. Near death many times. As a result, he received no more treatment and no more rehabilitation......After one year at the age of 69 he was transfered to a nursing home with everyone over 80..... 3 years later and 71 today..... he is still with us... laying in a bed of a nursing home still "waiting" to die. He has no speech and stopped responding and interacting with us only a few months ago.  He is a wonderful eater (of pureed food).  This is a horrible disease that takes away the true essence of a person.  I hope for a cure so no family has to endure this and that there could be better support for those that do, especially dealling with quality of life.  Growing up, my father always said that whatever he dies of they will find a cure for the next day.  I can only wonder if that might be the case here.