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February 3, 2017

Reflections Of A Caregiver

Last November, in honor of National Caregiver Month, our team combined forces with Novocure to run a nomination based contest in efforts to award one of the amazing caregivers out there with a trip to the 2016 Annual Society of NeuroOncology Symposium where they could be part of our annual exhibit, attend seminars on the latest and greatest treatments and hear from top neurosurgeons throughout the world. Our 2016 National Brain Cancer Caregiver winner was Christi Estes whose husband Rob had been diagnosed with a Grade 4 Glioblastoma in late 2013.

Today we have the honor of sharing her story with you, in her own words. We’d like to thank Christi for her honesty, her transparency and her encouraging faith while traversing such a challenging path.

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Where do I begin? The last 42 months have brought so much. Devastation, fear, research, exhaustion, but also abundant blessings. Wedding vow renewals, family vacations, a once dreamed of family farm house now a reality, and a Foundation to help others in their own battles. Four short years ago I never could have imagined our lives would look like this. Yet here we are and here we will stay, fighting the good fight.

The year 2013 was a strange one for our family. My husband Rob and I had been married for 17 years and together for 25. We are high school sweethearts. Rob’s behavior that year had taken a strange turn. He was easily enraged by our 15 year old son (a change for his usually calm temperament), his attention was compromised (but having 3 businesses to run can do that), and he seemed distant to me and our family. Finally, in June, the headaches started. They were relentless and eventually caused nausea and the inability for him to work. On August 16th, 2013, I insisted that we make the trip to Urgent Care after an appointment with Rob’s physician didn’t produce any answers. That night we received the devastation. A brain tumor. Large and ugly, causing lots of brain swelling. We were rushed by ambulance to a hospital better able to care for him. Then came the August 20th brain surgery, and the dreaded diagnosis on August 22nd. Grade 4 Glioblastoma. The most aggressive and deadly form of brain cancer had taken residence in my husband’s brain. He was given 12- 15 months to live.

Those first few months are a blur. My main memories are of crying out to God in pain and desperation to which He answered, “I will give you Daily Bread.” And faithfully, He has. The other things I remember include getting all of our affairs in order. Paperwork in mounds that seemed to stretch to the ceiling. Two businesses that needed to be sold. Disability applications. Medical plans and bills. The mountain in front of us seemed insurmountable and yet, with the help of so many friends, family, professionals, and of course God, we made it through.

During those first weeks my husband made a startling declaration. He wanted to start a Foundation to help others facing this battle. He called it “Can’t Never Could,” an old quote used by his mother when he said he “couldn’t” do something. We combined it with his life verse that he learned in Fellowship of Christian Athletes. Philippians 4:13: I CAN do all things through Christ who strengthens me.

Rob’s desire to live was and is strong. He is a fighter and I am blessed to be by his side as I marvel at his strength and tenacity. One of the things that Rob and I have always known is how very different we are from one another. But these differences create a beautiful balance that we know was God’s way of giving each of us the perfect help mate. As Rob fights the physical part of cancer, I fight in the research field, which he prefers to avoid completely. As Rob spreads his love to other brain cancer warriors through encouragement and his strong faith, I share my love through the details of managing our non-profit, Can’t Never Could.

Caregiver is defined as a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person. This definition surely falls short of what I believe a caregiver to be. A helper, yes. But also a mate to walk alongside the one they love in their struggles and in their victories as well.

Rob’s journey with cancer has taken many twists and turns. The first two years were relatively quiet and we spent hours and hours together as he went through radiation, monthly Temodar, and as we learned a new way of life. This was a sweet and precious time and our relationship was put back on a strong foundation after that horrible year of 2013. In November of 2015, Rob was diagnosed with recurrent GBM. Another brain surgery was followed by immediate re-growth in January of 2016. By March, the tumor had grown to 3.8 cm and as Rob started a clinical trial 700 miles from home I knew that my attention must remain constant on his care and well-being. Yet rather than feeling the burden of cancer, I felt blessed to be able to spend so much time with Rob during travel and treatments.

Today we are facing another possible recurrence. Thankfully, Rob is still physically well (except for constant fatigue aided by a daily stimulant) and we are hopeful that we will find the tools to continue to fight the beast.

Through each chapter of this fight, God has provided. Last November, Rob nominated me for the National Caregiver of the Year award through End Brain Cancer. His beautiful words and the words of our family won me the honor and we were able to attend the Society of Neuro Oncology’s Annual Conference in Scottsdale, Arizona as the guests of End Brain Cancer and Novocure. On the trip, Rob and I spent quiet time together relaxing and I was also able to meet and speak with leaders in the neuro oncology field. What a blessing the trip was and I am so thankful for the generosity of End Brain Cancer and Novocure, for the friendships made and the knowledge gained! As we prepare for the next phase in Rob’s treatment, I know that the blessing of this trip helped prepare me for my continuing role as caregiver. Through the people we met and the things I learned, we are better able to wage war on gbm once again.

As a wife and mother, I could never have imagined the life of my family would take this turn. My husband is a big man whose strength has always seemed larger than life to me. He has been a wonderful provider and partner for 21 years. The role of caregiver is an honor for me. Sometimes it feels overwhelming and it is certainly exhausting as I am responsible for more and more for him and our family, but I wouldn’t have it any other way. God has given me the gift of Rob. Caring for Rob is like breathing air. It’s not a choice. I love him and I always will. I will do whatever it takes to make sure he receives the best care possible and feels the immensity of the love I have for him. I will love and care for him forever.

~ Christi Estes


Enhancing patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, device & diagnostic industries and by closing the existing GAP from initial diagnosis to IMMEDIATE AND EXPANDED ACCESS to specialists, researchers, advanced & innovative treatments, clinical trials and critical care with the ultimate goal of improving patient outcomes through updating and improving WHO & NCCN Guidelines and clinical practices related to Standard of Care for brain cancer patients.

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