dad stage 4 glioblastoma--went quickly :(

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March 16, 2017 - quakertown, Pennsylvania

My father, Leonard was diagnosed with Glioblastoma (stage 4 ) on January 20,2016. Dad passed away in August. His struggle was long and grueling and came out of the blue. My dad was a proud 72 year old who worked part time at Bj’s deli cutting lunch meat. He was known as the “Cheeseman “ to all the kiddos who came in. My dad noticed while he was cutting lunch meat one day that the meat was “moving” in his hand and did not at all look like lunch meat. Dad had started hallucinating. He left work and came home and it continued throughout the night. At 5 am the next day mom and I took him to the Emergency room of our local hospital. Dad had just gotten over a terrible sinus infection and we thought this was stemming from that. They performed many tests and dad continued to see flowers and bugs on the wall and even a “birds nest” in my hair. This was all very frightening but the worst was the following morning when the neurologist came in with the results from his MRI. They sat us down to tell us dad had a golf ball size tumor in his brain and they would be transferring him down to University of Penn hospital which is approximately one hour south of us. Dad was taken by ambulance to Penn and by the next morning was diagnosed with Stage 4 Glioblastoma. It was the most devasting thing I ever heard. Life turned into a whirlwind and dad was scheduled for brain surgery on January 29th. The next few weeks before surgery everything was a blurr…like we were on auto pilot. Doctors telling us how our life would change and what are next steps would be. It was crazy! Dad was put on steroids and hallucinations slowed down a bit. Surgery was completed on January 29th and dad was there for 5 days. Radiation was scheduled to begin early march along with Chemo pill. Dad seemed to be hopeful as they told him if he had surgery it would give him approx. 18 months of Quality life. Dad seemed okay throughout February. Chemo started March 4th and he only was able to do 4 treatments before he lost it one night at home and destroyed my mothers bedroom telling her she was keeping him hostage there and he wanted to leave. I went right over and sat with dad all night . We went to Doylestown Hospital the next day where dad wound up staying for a week on one on one care as he was so mentally confused and actively hallucinating again. They transferred him back to down to University of Penn (radiation had to be stopped as he could not tolerate it anymore and the medicine they gave him to calm him (Ativan) he had adverse reaction to. He stayed at university of Penn for 42 days in complete delirium and no one could give us any answers. Mom and I traveled via train every day –an hour and a half each way. Mom has not been able to drive since she suffered three small strokes and back surgery one year before dad got sick. I used all my sick and vacation time at work. SO for 6 weeks they had no answers as to why dad was the way he was and why they couldn’t calm him down and stabilize him in anyway. WE had no idea what we were going to do..dad could no longer receive radiation as his body would not allow it. After 6 weeks and many medication changes they got dad stable enough to go to a nursing home. All dad did was beg us to bring him home. Unfortunately for his safety and my mothers(70 year old with high blood pressure and heart issues and spinal stenosis)this was not an option. For 8 weeks mom and I took turns so dad was not alone very much at the nursing home as he hated it and was in such an anxious state to come home. Dad was slowly fading away. I talked mom into getting him put on hospice at home. Dad came home on June 20th. He was so very happy to be home. Dad and I would take daily walks. He was a very proud man and still wanted to be part of all decisions. Sadly dad had been sick longer than he let on and he was in charge of all the bills and money at their home. He had let everything get out of control and I had to try to figure it out and his mind was already gone. It was nothing but a crazy struggle. Dad was home for 6 weeks on hospice before he one day stated his head was pounding worst than ever had. Dad was started on Morphine that day, ahich was a friday. For the next 2 days dad screamed in pain..banging his head against the wall and just yelling in pain. I have never felt so helpless in all my life. Dad was continued on Morphine and slowly calmed down. Monday dads brother came to see him but dad had lost his sight over the weekend and when he did communicate all he said was “please help me”. Completely heartbreaking. Wednesday night I sat with dad and spoke in his ear for a long time—I had him squeeze my hand if he heard me …which he did …I was soooo very thankful I had this moment and I woke my mom so she too could have hers. Dad died that Friday afternoon with mom and I by his side. Treasure every moment .....