Wish sibling and GKTW Staff member Adrianne Sietsma shares the story of her brother, Jako…
My brother, Jako, was diagnosed with stage IV brain cancer when he was going into first grade and I was beginning third grade. We are from a small town in northern Minnesota of only a few hundred people. I had never heard of cancer before, let alone childhood cancer. Because his cancer was terminal, my parents quickly moved to Rochester, MN, to be closer to the Mayo Clinic and stay at the local Ronald McDonald House. I stayed with friends and family back home, seven hours north, to try and maintain some normalcy. All I knew about cancer at the time was that you lost your hair and you got to live with mom and dad.
Almost a year into his treatment, Jako was granted a wish and quickly decided he wanted to meet Mickey Mouse. He had lost all his beautiful black curly hair to treatment and always wore a Mickey Mouse baseball cap. We barely made the trip because his white blood cell count had dropped so low just the day before. Our trip to Give Kids The World that spring was the first time I had seen my parents in months. It was just as exciting for me as it was for Jako and my parents.
I can still remember waking up in our GKTW villa that first morning. There was a stuffed kangaroo for Jako and one for me. This may sound trivial, but it’s small gestures like these that make GKTW so magical. The fact that the Village celebrates siblings and parents as well as the wish kids is incredibly unique and impactful. When Jako was going through treatment, for instance, it was the late ‘90s and Beanie Babies were all the rage. He received a Beanie Baby for every MRI scan and blood transfusion; from the local church group; and from other organizations in our small town. As the older, healthier child, I got nothing; rightfully so, as I wasn’t battling stage IV brain cancer. However, as a 9-year-old, that is hard to understand. So seeing a stuffed animal that was meant for me, and not just for him, was life-changing and more appreciated than anyone could know.
That week at the Village our family smiled a little bigger, laughed a little more and made memories to literally last a lifetime. Though it was more than 23 years ago, I still remember getting breakfast in the Gingerbread House, taking the ironic ‘Titanic – king of the world’ photo on the Serenity Ship (you can tell it was a ‘90s wish trip), and picking out the prettiest animal to ride on the carousel. I even remember the volunteer telling me I could not sit side saddle on the carousel because it wasn’t safe, even though I thought I was so fancy and mature for a third grader!
Through the grace of God, millions of prayers and the great medical team at the Mayo Clinic, Jako was able to defeat cancer. However, it wasn’t until just a couple of years ago that he was officially determined to be in remission. In that time, I had graduated high school and college, and moved from Minnesota to Florida where I began working in the Development department of GKTW. To celebrate Jako’s remission, my family planned a trip to Florida. During this trip, Jako and my parents volunteered at the Village as they typically did when coming to visit me. This trip was a little different, however. I remember walking with my brother from Amberville Train Station to my office back in Towne Hall. Jako and my mom had just wrapped up their volunteer shift working the arcade in Amberville. As we walked, Jako looked up at me and said, ‘Sis, I don’t wonder what heaven is like any more.’ The significance of this statement shocked me.
When Jako was in treatment, his type of cancer was terminal. My parents were given the advice from social workers and nurses to openly talk about what was next, what the afterlife was like, etc. My mom would always start the conversation and say her version of heaven was that there was no laundry; it just ‘poof’ went away. My dad always said heaven would be like the Minnesota Vikings winning the Super Bowl – which as you may know, is still a farfetched dream for many Minnesotans. My brother said heaven was made of mashed potato clouds, as that was the only food he could handle eating when going through chemo and radiation.
With this in mind, Jako’s comment about heaven made me nervous. Though we were celebrating his remission, was he not feeling well? Was the cancer back? So I asked him what he meant. He replied, “I don’t wonder what heaven is like anymore because I know it’s just like GKTW Village.” This statement took the wind out of me and instantly brought me to tears. As his sister, I was extremely proud of this ‘wise-beyond-his years’ remark. As a GKTW team member, I had never been more proud of the work our teams do. This sentiment confirmed the true mission of GKTW that we are a little slice of heaven for our visiting wish families.
Now that I am the parent of a little two-year-old with another baby on the way, I don’t think there is any greater gift than what GKTW provides our wish families – especially the parents. As a relatively new mom, I can never begin to imagine what my parents and all those parents and guardians go through. To be that advocate for your child, their caregiver, their entire support system is truly the definition of a Hero. To be able to see your child outside of the hospital walls, to see them laugh with their siblings, to not have to worry about the bills or even what’s for dinner that night, is the true reason GKTW exists.
For the past seven years, it has been my honor to be part of the Give Kids The World Village team. To see first-hand the power of a wish is one of the greatest joys in my life. Hope is one of those intangible things that exists. However, I believe you can truly ‘see’ hope come alive at the Village. You can see a family check in one day and check out a week later with a renewed zest for life. You can see a dad look at his kids during Winter Wonderland and see hope for the next holiday season. You can see wish siblings taking part in the fun and see the hope return to their eyes as they think about the future of their family.
Thank you to all the volunteers, staff, board members, donors and corporate partners who bring the mission of GKTW to life. It’s compassionate people like you who make GKTW a little bit of heaven on earth for families just like mine.
Tags: family experience · family story · wish family ·
