You have left us too soon, but your presence will be felt far and wide for a very long time. From the moment I first spoke with you on the phone, I knew that you were a fighter. We met in person in San Diego three years ago; your mother, Jana, and bestie Andrea beside you. I met your husband John later and I knew you were surrounded by an amazing support network. Little did I know then that your network of friends and family were far-reaching. This is such a testament to you, Nikki, and your zest for life.
Looking through social media this past week, I have come to know you even better. From your college days with your sorority sisters, your friends in Arizona, and the beautiful pictures of your wedding day. All of these illustrate the love and happiness that filled your life. These memories will live on in everyone that cherished your friendship.
You were a true warrior, respected and amazed by all who watched you fight this fight for so long. We all glimpsed the ‘inner Nikki’ by observing your various hair color changes, the furry pink kitchen chairs in your new house, the honest emotion of your blog, and your love of kittens to name just a few.
Though you faced overwhelming challenges, you faced them with grace, humor, and dignity. When we met in Scottsdale, you walked into the restaurant with long gray hair. We laughed together when you said it made you look like Lady Gaga, but internally I thought to myself what a statement she’s making – “Never let life’s challenges get you down. Plow through it and embrace life as it’s handed to you.”
You continued to face your diagnosis by immersing yourself in ways to make a difference. Your 30th birthday was a fundraiser to support GIST research. Your fundraising efforts were continuous through the years and you engaged Andrea to do the same. You joined us last year at Life Fest where you were awarded the Allen Tobe Volunteer of the Year award by The Life Raft Group. There wasn’t a dry eye in the house as you shared your plea for change and your heartfelt story.
You were always there when I needed you as well. As the Arizona state leader, a speaker and volunteer at both GIST Days of Learning and Life Fest, you never ceased to amaze me by being present and giving of yourself. You flew across the country this past March to attend GIST Laugh in Washington, DC, a comedy fundraiser hosted by Andrea for The Life Raft Group. You had just been discharged from the hospital, but your courage, strength, and determination would not allow you to miss the event. You were surrounded by friends from across the globe who loved you, united to support research.
At The Life Raft Group, we are grateful for your incredible support of our GIST community, fundraising toward a cure, and your part in the formation of the Pediatric & SDH-Deficient GIST Consortium. You will be missed by so many including all of us here. When I think of courage, Nikki, I will think of you. When I think of strength, I will think of you. You have forever changed my life and the lives of so many others and for that, I will always be grateful.
Rest in Peace, dear Nikki –
(Laura Occhuizzi, LRG Senior Vice President)