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Amy’s Fight for her Mom Against Brain Cancer

Amy, with her mom, Shannon

What do you do when the person who has helped take care of you your whole life gets sick? How do you react? “Shannon is my mom, and my best friend. She has always been the pillar and guiding force of our family,” Amy told us. Amy’s mother, Shannon, is currently fighting cancer, and Amy agreed to share her family’s story with us.

The diagnosis is the beginning of the nightmare that cancer brings; no one reacts or feels the same way. Amy shared with us how the diagnosis for her mother came about. “I was totally devastated. Mom noticed that she was having problems finding places and connecting thoughts. The doctors thought that maybe it would be something to do with the onset of menopause but went ahead and ordered a CT Scan. As soon as Mom got back to work she had a call from the doctor telling her they needed to do an MRI asap because something showed up and they thought it might be cancer. The next couple of weeks were a total blur. We visited doctor after doctor and no one really had very many answers for us. My mom ended up going to Barrows Neurological Institute in Phoenix where she underwent a brain biopsy and Gamma Knife surgery. The surgery confirmed that she had two marble sized glioma tumors. This is the most common type of Brain Cancer; however, it has no known cure. The biopsy came back as a III-IV. To be on the safe side the doctors went ahead with treatment as if it was a Glioblastoma Multiform IV. The level of grief that suddenly hits you when you know your parent will never be the same again is absolutely devastating. We cried a lot during that time.”

The challenges that follow cancer only add the the stress on a family. How do you pay for treatment? How are you going to deal with transportation to doctors appointments? Etc. Amy shared with us some of her family’s challenges in regards to brain cancer, “With this form of cancer there are several hardships. For one, having multiple brain surgeries is incredibly costly. There were many days that my dad had to take off to either be with my mom during recovery or to transport her to the doctor. Him being the only source of solid income made everything difficult financially. Probably the toughest is seeing my mom suffer. For the first few months after the first surgery she did much better than we expected. The problem is that this cancer is aggressive and keeps coming back. That means more surgeries, more treatments, and more complications. For the last month, since her last surgery, my mom has been paralyzed on her left side, and partially blind.”

So, with all of these challenges, how do you cope? Where do you find the comfort to keep calm and keep going? Your support system. Your family and friends are the ones that you turn to in your time of need. Amy supports this claim, “The greatest comfort and support has come from family and friends who have stepped up and really helped our family. Without them I really don’t know how we would have made it or stayed positive. Cancer is mentally and physically exhausting for everyone involved, and having support has just kept us going. GiveForward has allowed us a platform to keep friends and family in the loop about what was going on. It has also provided a place for people to give anonymously and easily. We plan on utilizing the meal coordination now that mom is coming back home with Hospice. I think it will help a lot.”

We asked Amy to share with us the nicest thing someone has done for her family since they started their fight with brain cancer. Her answer showed us that her network truly has stepped up in support of her family. “We have had so many wonderful things happen to us. My mom worked for the University of Oklahoma before she got sick. After her diagnosis we had such an outpouring of support from the staff and doctors there. They helped us financially, and emotionally through so much. There isn’t a better group of people on the planet than them. My dad has worked for American Airlines for the last twenty or so years, and, before my parents left for Arizona, the guys on base organized a fundraiser to raise money, and also gave my dad a lot of vacation time to use. I work for Rogers State University and last year several individuals in my office raised money for me to take my mom out and do things over Spring Break. I will seriously never forget those times. We had so much fun, and it was one of the last non-doctor related outings we have had together.

We also just had so many people step forward and help us. I had friends from my undergraduate study that have helped us financially and by spreading the word about our GiveForward page. Also we’ve had a lot of help from several family members financially, and also in other ways (like coming to clean the house while my dad is taking my mom to the doctor, etc.). If anything, this horrible disease has really shown us the people in our life that care about us and are there for us.”

In addition to Amy sharing her story with us, she also shared advice for those who are also affected by cancer. “Don’t give up. It’s really hard. This will probably be the hardest thing you will ever have to face in your life, but cherish every day you have. My family has always operated under the motto of tomorrow is not promised to any of us. Have fun, laugh, cry, travel, do whatever you want. Make amazing memories, and know that eventually someone is going to find a cure for this horrible disease. It reminds me of a scene in my favorite book series, The Lord of the Rings (something that my mom had to listen to me talk about all the time when I was growing up. She also had to watch the movies a lot) where the character Frodo laments to his friend Gandalf, ‘I wish it "Make amazing memories, and know that eventually someone is going to find a cure for this horrible disease."need not have happened in my time.’ To which Gandalf replies, ‘So do I … and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.’ And that’s exactly what you have to do. Make the best of the time no matter if you’re sick, healthy, or on the mend.

If you are facing brain cancer specifically, I would recommend the Barrow Neurological Institute for treatment. They are phenomenal and one of the leaders in brain surgery, etc. You will not be disappointed by the level of care that you receive. Also, make sure you get an oncologist that you feel comfortable with and who you think really listens to you/the patient. I would recommend research hospitals for treatment just because they are tuned in with the most up to date treatments and clinical trials and that is incredibly important for diseases like GBM. Since we live in Oklahoma we went to the OU Stephenson Cancer Center in Oklahoma City and it was really great.

Most importantly, be realistic in your expectations to avoid going through an emotional rollercoaster. I’m not saying to be negative, but realize that people respond to treatments differently and what might work for someone may not work for you, and that’s fine. If you have a good team of doctors, they will have a game plan on what to try and what to do,” she shared.

Amy is an advocate for brain cancer research due to the lack of funding. She’s shared with us some information to help spread awareness, “According to Miles For Hope, ‘Each year more than 200,000 people in the United States are diagnosed with a primary or metastatic brain tumor. Primary brain tumors comprise approximately 40,000 of these diagnoses.’  Brain cancer is one of the most underfunded cancers in terms of research. According to Miles For Hope, ‘At this time, brain tumor research is underfunded and the public remains unaware of the magnitude of this disease. The cure rate for most brain tumors is significantly lower than that for many other types of cancer.’ There are many people making strides to develop alternative treatments for this type of cancer. For instance, Duke University has a clinical study that has been fast tracked by the FDA that uses a genetically modified version of the polio virus to attack the cancer cells in the brain. It has been really successful for many people. What people need to realize is how low the survival rate for GBM really is. According to the American Brain Tumor Association most people live a median time of 14.6 months and the two year survival is 30%. They also note that a study in 2009 showed that only 10% of patients with this particular cancer live five years or longer.

We have successful treatments for so many other cancers, but this is one of the cancers where the odds are pretty stacked against the patient.”

For more information about Amy and Shannon’s battle with brain cancer, you can visit their GiveForward page here:

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