From the day Zak was diagnosed with DIPG until the day he took his last breath on December 26, 2008, it was only seven and a half months. But those seven and a half months were life-changing and are made up of memories that I hold onto tightly.
Zak received treatment immediately after diagnosis at St. Jude Children’s Research Hospital. Soon after, he began planning his Make-A-Wish trip. Zak’s wish was to go to St. Thomas. I still remember his Make-A-Wish dinner at the Spaghetti Warehouse and the cake that read ‘Zak, Wishes Do Come True’. It gives me chilling goosebumps, years later, to look at pictures of that sendoff party, and know how the kindness from Make-A-Wish remains deep in our hearts in our darkest moments.
During our St. Thomas trip, we were all able to ‘forget’ about the dark cloud that was above our heads. The worry, the anxiety, the grief all vanished during that unforgettable week in paradise. To say Zak had a blast is an understatement. He frequented the bar to get his smoothies, indulged in the all-inclusive food, snorkeled and fed exotic fish out of his hands, was baptized in the ocean in an emotional ceremony, and our boy even went parasailing!!
I will never forget the moment he got back from flying up in the sky - I asked him if he had fun and he said, ‘It was worth every moment.’ Little did I know how much that saying would stick with me for the rest of my life.
Going back to reality after our wish trip was tough. Zak had a follow up at St. Jude where a scan revealed that the tumor had shrunk by 30%. I was in the drive-thru getting my morning coffee when Zak called to tell me the hopeful and exciting news. His tumor was now the size of a penny!
Unfortunately, that good news didn’t last. Shortly after that, it was clear that the tumor was back and growing with a vengeance. Thanksgiving was a painful one. My heart was shattering into a million pieces as I knew this was one of my last holidays with my brother. As Christmas drew closer, so did the anxiety for everyone.
Zak understood how sick he was, and his biggest fear was leaving our mom and dad. As time grew shorter, Zak began to reach out to every single one of us for our own special moment with him. I remember my moment with him, sitting by his bedside when Zak grabbed my head, placed it in his lap and stroked it, telling me without any words that it was going to be okay. Time stood still and I just laid there and sobbed. Here was a 13-year-old boy, so selflessly comforting his family, knowing what was inevitably coming.
On the night of Christmas Eve, Zak went to sleep, and slept peacefully through Christmas morning. On the morning of December 26th, Zak took his final breath, surrounded by so much love. It was the absolute worst day of our lives.
As time has gone on, without our Zak, it has been extremely painful. Grief is all consuming and never ending. But in immense grief there can be beauty and hope. When I close my eyes and remember the moments when Zak was his happiest, it was on that beach in St. Thomas – sun shining down, toes in the sand and that big grin on his face. His wish wasn’t just paradise in that one moment…it was everything to our family. It took us, a broken family blanketed in sadness, and made us whole.
I have no doubt that Zak is up there right now in his beautiful St. Thomas paradise, sipping one of his tropical smoothies and watching over us. Remembering Zak’s wish during the holidays is a bright spot in all consuming darkness. Our hearts remain forever grateful for the life-changing Make-A-Wish mission of ensuring that every child faced with a critical illness has their opportunity for paradise.