September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Joan Kelley
I never expected to be on this side of the cancer story keyboard. I never expected to be writing about my 17 year old son Will’s journey. I’m the one who reads those stories, cries through those stories and shares those stories. I’m the one who delivers the meals to those families. My family was the one who ran the 5Ks for cancer charities and dumped their piggy banks to help those other families.
Then one day, in an instant, on June 17, 2009 at 6 p.m., our life changed….not just Will’s life, but all of our lives. All things forward from that moment had a new lens of perspective on them. In an instant, we became one of “those families.” Cancer had come to our doorstep. We needed help and meals and support. We received funding and gifts from the very change we had put in the donation containers at Panera or the McDonald’s drive-thru.
In that moment, we began an intense doctoral-level training on leukemia in a matter of days, in a school of cancer I never signed up for, or ever had any interest in. I went from not knowing what leukemia was or how to spell it to being able to talk with doctors about drugs like methotrexate and how to best do a spinal tap on Will. Anything that mattered the day before no longer had any meaning or priority. The plate was empty except for caring for Will and trying to continue to be a mom to Will, Megan, Drew and Mitchell and wife to John.
Right before that instant, I thought Will had mono. I thought he had just been a lazy teen for the last couple days. We went to the doctor and they did some blood work. The instant happened to be the day of our 20th wedding anniversary. John and I were headed out to dinner. I had given him an anniversary card that said how “I couldn’t believe it had been 20 years and I couldn’t wait to see what God had in store for us in the next 20 years.”
Little did I know what was in store.
The pediatrician called as we were headed out to dinner to celebrate. She asked if I was alone. I was ready to tell her which pharmacy to call with the prescription for amoxicillin. She said “Mrs. Kelley, Will doesn’t have mono. I think Will has leukemia. Pack a bag to stay a week downtown at Children’s Memorial Hospital.”
We walked to Will on the living room couch to break the news. How does one tell your 16 year old that he has cancer when all he’s thinking about is if he should watch another episode of The Office or go get some more popcorn? We headed downtown. We looked up on our phone how to get there. We sat in silence. We did all the tests. We got the “official” news about 11 p.m. that they were 100% sure that Will had leukemia and treatment would begin right that instant. Will said “I’m not worried, Mom. I’m just annoyed.”
You see, for Will, this was just an interruption in the dreams of a 16 year old. He wanted to go play lacrosse, to go out with his friends, to fulfill his dreams of being an aeronautical engineer one day. I wanted to wake up from this horrible nightmare that meant 3.5 years of chemo, radiation and hospital stays. I wanted to go back just a few hours to the moment before the instant, where I didn’t know how to spell leukemia, where I read other people’s stories. But instead we were headed up to the “oncology floor” where the walls are loaded with smiling bald children’s faces, and where for some odd reason that I couldn’t take in, my son’s name was on the white board behind the nurse’s station for room 416. How could this be? How could I replay the movie and take out this “instant in time” that changed everything.
It was like we were immersed in this new culture that I had no idea existed. And then, eleven months later while attempting to go to school, after following all the instructions, taking handfuls of pills each night, giving shots, daily nausea and puke buckets hidden throughout the house, enduring weekly chemo infusions, several weeks of radiation to his brain, too many hospital stays to count, after we had got through all the worst . . . Will got a flukey set of infections his body couldn’t fight off. They were caused as a side effect of the very medicine that was saving his life.
In an instant, on May 21, 2010 at 4:08 p.m., his life here on earth was over. We joined a new culture, got a doctorate in a new field of expertise and slept even less. This new place was called grief. An illusive, scary and unpredictable place where we spend a lot of our days . . . even now, three years out from that “instant.” In an instant, our lives were changed. The world was changed.
No one calls him a “survivor.” They say “he lost his battle to cancer.” I say no to both. That instant changed some circumstances whose outcome I didn’t pick. But Will is one of the strongest, most courageous survivors I know. Cancer didn’t win the battle!
Will’s story is forever strong . . . around our dinner table as we laugh about memories, as we snuggle up in his room for stories or bedtime prayers, in the lives of his friends, in his church, in the thousands of dollars raised so others don’t have to go through this one day, at the annual World’s Largest Water Balloon Fight held each summer to remember him, in double rainbows and orange monarch butterflies that show up on hard days, in random acts of kindness, in the eyes of the homeless man we befriended on the way to the hospital each week.
Will’s life here feels like an instant, but his story is just not over yet. And so I sit here on this side of the keyboard, as caretaker of his story this side of heaven, until that precious day when we meet again and all things sad will come untrue….in an instant.
If you would like to read more of Will’s story you can go to www.caringbridge.org/visit/willkelley. Before Will died he wrote a document that we found on his computer called Will’s Will. In that document he wrote that his sister could have his phone, his brother could have his computer and his other brother could have his phone. And then he asked that we set up a way to honor some of his favorite charities.
We ask you to join him in helping these wonderful organizations out and let Will’s story continue on.
- Wellness Place
- Lurie Children’s Hospital of Chicago
- Leukemia and Lymphoma Society: Team in Training
- Cal’s All Star Angel Foundation
If you’re looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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