52 People You Need to Meet: #21 Stacie Kneip

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Trisha_Kneip

Trisha Ann Kneip is my mother, and now she is watching over me from above. She wouldn’t have to if it weren’t for September 23, 2010. My mom was my support. She was there for me from the day I was born until the day she passed away on May 28, 2012…my 24th birthday. My mom and I were very close, and our bond grew stronger with the birth of my first daughter, Hope, who was born very sick and premature. My mother was my hero and the one person I could ever count on.

In late August of 2010, my mom and I were out on a walk and she was suddenly slowing down and said she was exhausted. Trips to the store were much the same, she was walking so slow and tried to push herself forward and her body wouldn’t let her. Over the next few weeks she was beginning to sleep more and became more exhausted. She went to her primary doctor who told her to take more vitamins. Since we both ate extremely healthy and exercised on daily basis, she knew it wouldn’t be fixed with a vitamin. She was at work one day when her cell phone rang and she answered, it was my one year old daughter. My daughter babbled in baby talk, and my mom told me she was going to the ER right after work because she knew something was wrong. My daughter’s voice was the sign she needed to get answers for her fatigue and the facial numbness she felt on her left side.

I called multiple times to see what was going on at the ER that night, and I will never forget those words, “ I am alright Sissy, they are going to keep me overnight though.” My mom was trying to save me from the agony of her diagnosis. I pushed for information and she said, “It’s going to be ok Sissy, but they said I have a brain tumor. “ Her voice dropped, and I could tell she was trying so hard to be strong, when she didn’t have to. But it was her nature to be strong for everyone else. We were in shock, and after that phone call I fell to the floor surrounded by tears.

The doctors stated they believed we were dealing with a high grade glioma. She was scheduled for surgery on the 29th of September for a biopsy because her tumor was in the thalamus region and was too difficult to be taken out. We received the results on October 7, 2010, after waiting at least two hours in an overcrowded waiting room. The doctor said she had what we suspected – Glioblastoma Multiforme, the most aggressive form of brain cancer.

My mom started radiation and chemotherapy which made her even more exhausted. On December 31, 2010, a tornado came through our area and knocked out several close neighborhoods. On that day, I came home and found my mom lying unresponsive. I called 911 and told them about her cancer and that they needed to hurry. They rushed her to St. John’s hospital, and we found out she was going to need a shunt. She remained hospitalized for a week. She was then sent to a rehabilitation hospital to help her get coordination again. She went on four rounds of chemo and a new drug called Avastin that worked for a while. But like those who have been on this journey know,  Avastin only works until it doesn’t. My mom went on hospice care in April 2012 and passed away on May 28, 2012.

What is it like to have the ONE person you love the most not be here? It is the absolute worst.   Every day I wake up with this urge to call my mom, to see her and let her granddaughters get to spend time with their grandma. Instead I show them pictures, and talk about her on a daily basis. It is important to me that they know of her kind heart, compassionate ways and her humor.

What I wish I knew before GBM?

I wish I knew life could be taken away so harshly. I have never seen cancer change someone’s appearance so much! And yet this change is recognizable by those who know a GBM patient’s journey . The journey of GBM lives in the eyes of the patient; they all have the same eyes.

I wish I would have said I love you more. I know I said it every chance I got, and as much as I could, but if I could have said it more I would have.

I wish I would have asked more questions. I wish so much when I cook dinner that I could call my mom and ask her about a certain dish. I wish when my kids are sick that I could call and ask what to do. I wish I could have heard more about life.

What cancer allowed me to see – Cancer allowed me the ability to show my mom that I would be ok. Once given the GBM diagnosis you know the prognosis is grim. Patients receiving treatment will live approximately 15 months from the date of diagnosis, some shorter and some longer. I did not want to see my mom as patient; I wanted to see her as only my mom.  I had no idea how much time I had left with her. I wanted her to live as much of her life as possible being as happy as she could and to live out her dreams as much as possible. Her dream since childhood was to visit California so I wanted to try and give her California. I wrote an essay to the Dream Foundation that would grant her a dream of her choice, and since she couldn’t fly to California she went to her second favorite place Florida. I wanted to show her I would be ok in life, as I felt that is what any mother would want before they passed. So I lived, and I tried to let her live her life as she did before cancer. Whether that was the right thing to do or not, I am not sure. But regardless what you do during this journey you will never feel it was enough, there is always a feeling of guilt or “what if”. What you have to remember is that you did what was right for you and your loved one in that time, and they knew that. As I write this just a few days before my mom’s two year angelversary and my birthday, my heart hurts, my emotions are a mess, and the pain I feel from the loss of my mom will never subside, it will only get easier over time to cope with it.

I love and miss you more than anything in this world mom.

To learn more about Brain Cancer please visit: http://www.abta.org/brain-tumor-information/types-of-tumors/glioblastoma.html

There is not enough awareness for Brain Cancer which is why Grey in May is so important, don’t wait until it happens to your family to raise awareness start now and help by remembering all of those who are fighting or fought for their lives from this horrible beast GBM.

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