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May is national brain tumor awareness month. After being affected by brain tumors every month is brain tumor awareness for my family so I am sharing my story again today. Imagine being a prisoner of your own body. Not being able to speak, move, walk or even sit up on your own. Not being able to chew and swallow your food so you have it running by tube directly in to your stomach. This is all what happened to my step dad in just 3 quick months. He was diagnosed with stage 4 glioblastoma multiforme brain tumors in June of 2012. Like many types of tumors, the cause of glioblastomas is unknown. After learning of his diagnosis I went to the internet looking for as much information as I could find so I knew what to ask the doctors and my mom. I found that the average life expectancy for his type of tumors was 14 months to 2 years so to only have his fight with the tumors to last 3 months was way less than the average.
Once he was diagnosed he had surgery to try and remove the tumors. The doctors were able to remove some of them but because of the finger like tentacles that glioblastomas have they just couldn't get them all. After spending time in hospitals from his surgeries he began radiology treatments. My mom was by his side night and day. She had to stop going to work to be able to be with my step dad. I was with them at the hospitals every chance I could.
In Roanoke hospital before his brain surgery he was full of jokes and harmless flirting with his nurses. We learned that all his years of smoking did hardly any damage to his lungs. I joked with him that he wasted all that money to not be inhaling when he smoked. I miss that goofy smile of his that he would make when he was trying to be funny. After his time in Roanoke he was sent to be treated at the cancer center at Duke University medical center.
After his surgeries he couldn't talk. He could understand what was being said to him to an extent because he could blink his eyes in response to us for yes or no questions. There was a slight glimmer of hope in me when the doctors at Duke said he could be transferred to a rehab facility to work on learning things again as he continued his radiology treatments. I thought ok that means they don't have to keep him hooked to all the machines in the hospital. Great! Well he spent time in rehab, my mom still by his side. The first rehab center was in my town so I was able to visit daily with my boys. Lee (my step dad) wasn't able to do much for himself by this time. He needed assistance in moving, walking, eating, pretty much living life in general for him was all assisted. Then he was able to play the piano a little with one of his nurses. My mom seemed in good spirits at this time. They moved my step dad to a rehab center in the town where my mom and step dad actually lived so my mom could go back to work and still be able to spend every day with Lee. Everyone seemed to think he was doing so well.
Then he got sicker. While in the second rehab facility he came down with pneumonia in both lungs. His body all ready fighting the good fight with the tumors and having the low immune system we weren't sure how he could take on the pneumonia as well as everything else. He went in to DRMC in Danville the beginning of August. The doctors told us (on my mom's birthday) that there really was nothing else they could do for him. So my mom and I spent her birthday and the next two days by his side in the hospital. We were both with him when he passed away.
At first I blamed the employees at the second rehab facility for his death. I felt like they didn't tend to his needs as well as they should have. When he would have family visits he shouldn't have been laying there with mucus strung from his mouth to his clothes from not having his mouth suctioned out periodically. He couldn't swallow on his own so it needed to be done for him. Eventually I came to terms that he was just sick. We knew that because of his health and because he was in bed for so long that pneumonia was a high possibility.
Why share our story of my step dad, Lee, with y'all? For the family members who are dealing with the effects that brain tumors can have on not only the patient but also all of those who love them. I know what you are feeling. To an extent I know what you are going through. It's hard. There may not be a cure for glioblastoma multiforme brain tumors just yet but I continue to have hope that something will be found soon.
What can you do to help with brain tumor awareness?
- Donate to the National Brain Tumor Society If you would you could donate to the brain tumor community page my Mom has in memory of her soul mate, Lee. All money goes directly to the brain tumor society.
- Proudly display a grey ribbon or grey ribbon clothing. You can create your own at zazzle or cafepress or you can purchase something from Choose Hope.
- Hold fundraisers of your own. We did a fundraiser in 2013 that did pretty well. In 2014 we did a car wash and had a poker run and our totals for 2014 have all ready passed what we raised in 2013.