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Shandy & Trey’s Battle Against Brain Cancer Story

Trey smiling in hospital bed

When someone you know and love is diagnosed with cancer, that’s what people begin to classify them as. A cancer patient. There is MUCH more to a person than just their disease. Shandy’s husband, Trey, is dealing with cancer and she agreed to share with us who he is and how they are facing this battle. “Trey is a Jax Beach native, a loving husband, student, and amazing father. My husband is a hard worker and probably the nicest person I have ever met. Nobody can defer his good spirit, everything has a silver lining, and every experience is a good experience to Trey. He enjoys spending time with family, and being outdoors,” she shared.

Unfortunately, awful things happen to great people; Trey was diagnosed with brain cancer. When you hear that someone you love has cancer, it’s hard to accept. Why them? How can I fix it? Trey was having difficulty going through his daily life without passing out randomly and getting spells of nausea. He passed out while driving, which was the last straw, so his family took him to the ER where he was eventually taken to brain surgery. Shandy shared with us her experience with Trey’s diagnosis and the brain cancer story of her and Trey’s fight to defeat this awful disease. “At first, I felt nothing. It was a strange feeling. It didn’t hit me until after he came out of brain surgery. Seeing him wheeled back to the room lifeless, but still had the ability to whisper “We did it”, broke me. That is when it hit, this is real. We didn’t get the official diagnosis until 10 days after surgery. That was hard, my heart stopped, the world stopped that day,” she said.

Quickly following a cancer diagnosis is a series of challenges; financial, emotional, and physical. We asked Shandy if she could share some of the hardships and challenges that she and her family go through, “Where do you start with this question? Cancer is hard. You experience hardships the whole way and (we) will forever. That tumor was awful, I watched my husband drop from 200 – something down to 150. My husband is by no means a small person, standing a little over 6’3”, 150lbs is not a good look. I watched him throw up for weeks, fall downstairs, and basically become a vegetable prior to the diagnosis. Due to the location of the brain tumor it left permanent damage, Trey is semi paralyzed on the right side of his body. He is able to move the limbs, however, unable to feel on that side. The tumor damaged a piece of the optical nerve so, for the first year he had some “sweet” glasses to help his left eye; however, his nighttime vision is still not good. A side effect of the tumor itself is balance issues as the tumor was on the brain stem. Although the tumor is gone, so is his balance. After hearing that he had the highest grade of his tumor (EPENDYMOMA 3), that was when things got more challenging. Since .04% of all cancer patients have that tumor, out of that .04% only .01% actually have a grade 3… no research is done. There is no money in his tumor so no incentive for research.  We went with the standard protocol which was radiation after surgery. Radiation was hard, he had it every day for 7 weeks. He was tired and weak, and our 3 year old son did not understand. That was another challenge, how do you explain to a toddler your daddy is sick? How do you explain it to where he truly understands? We finished radiation and in February of the following year his symptoms came back, twice as bad as previous. We called our doctor and immediately went in. Although we weren’t positive, we knew this was not right. Our world stopped again with a second diagnosis. Same tumor just inside the brainstem this time. Inoperable. Our doctor did not know what to do, so we cried and cried. After some research we found a specialist. We flew up to NIH and spoke with a doctor who researches rare tumors. He was aware of Trey’s tumor and just finished a study. It had an 85% passing rate. He put us in touch with a doctor that would be our go to doctor and they would work together. We thought we were in the clear, we were wrong. We received a rejection letter from insurance stating they would not cover his medication as it was not FDA approved. It felt like this was their response ‘Sorry your husband isn’t worth it’. This chemo was our last option and we were denied…”

With constant battles and rejection, how do you overcome it all? How do you find a way to look past it and still be positive and find comfort? We asked Shandy how she and Trey do it, and this is what they said, “Support, support, support. I was (am) very fortunate to work for an amazing company that allowed me to take leave for three months to be with Trey. After his surgery I did everything, I bathed him, fed him, and clothed him. Literally everything. We are not well off by any means, and no way were able to afford a nurse to come see him daily. Without my companies support I don’t know what we would have done. Along with having an amazing company, our friends really stepped up to the plate. Friends that I have not heard from in years reached out to help with our son, cooked us dinner, brought us food to the hospital, watched our dogs, whatever it was – they were there for us. My dad and his mom were another huge help. My dad flew down to help and his mom was there if she was able to help. The community came together in our time of need and it really shows how lovely our town is and the beautiful hearts that our world has. We found support groups for other brain cancer patients that really helped us and I went to counseling to help me cope with all that was happening. I cried many nights. All emotions are normal when you are facing these scary challenges. Do not fear your emotions, it is natural. We were not afraid to reach out. If we did not reach out through social media/GiveForward/counseling, we would not have found our answers that we know today. We comforted each other; this was just as scary for me as it was for him. The unknown is hard. However, light can be shed on even the darkest days. Through fundraising, reaching out to medical centers, and even the pharmaceutical companies, we were able to get Trey’s treatments. Without insurance helping we were looking at paying about $12k a month for his chemo that he had to take daily. However with reaching out and taking risks, we were able to work with pharmaceutical companies and create a HUGE discounted payment option. I still remember that day getting the phone call from pharmaceutical company saying we qualified and he was getting treatment. I cried and cried, happy, beautiful tears. My husband"However, light can be shed on even the darkest days." wasn’t going to die! The world isn’t against us!”

What is a way to find comfort and the opportunity to overcome it all? Reaching out for support. Friends and family can provide a vital support system during times of need, like what Shandy and Trey are going through. “It is amazing who really comes to be your support system during a crisis. Sometimes it isn’t who you would expect. Like stated earlier, our community was amazing, my company still is a major support system and vows to continue to support our family. We were put in contact with some amazing people one’s we would have never met if we did not have to go down this journey. Out of this journey we have made some great friends that we still hold dear,” Shandy said in reference to her biggest form of support.

Shandy and Trey have been through a lot, and they plan to fight on. Where do the find the courage and strength to keep going? To keep fighting? Shandy shared with us some advice for others who are faced with tough battles as well,” It is scary, unfair, and unknown, but you are not alone. Give into your emotions; it is natural to feel all feelings during this time. Cry, let it out, please let it out. But at the end of it, pick yourself up, and reach out. There are people out there that want to support you and help you. Let these people help you. Love will surround you, it may not fix everything, but it sure goes a long way. You are oh so loved and not alone in this battle. You got this!”

Cancer can change your life and give you a new perspective. It can create someone better, or someone worse. How did cancer affect Shandy and Trey? How has it left them? She let us know their current status with his treatment, as well as the impact cancer has had on them. “My husband is not cancer free, but we have a positive outlook. He is going on a few months now off chemo with maintenance scans to watch his tumor. Although this cancer really wrecked our world, it saved my husband. Prior to cancer we did not see every day as an opportunity. We went through the motions of work, school, children, etc. Our love is stronger than ever, and our relationship is unbreakable. My husband stopped smoking cigarettes and picked up working out. He chooses to view days as a blessing rather than wishing to hit the snooze button. Cancer sucks, but we aren’t alone in this fight.”

To learn more about Shandy and Trey’s story with brain cancer, you can visit their story here.

Whose world will you change?