I grabbed my cell phone to shut off the alarm even before I opened my eyes. As usual on a Sunday morning, I checked the news before my feet left the warmth of the covers so I wouldn't miss a disaster, a tragedy, a loss to remember in the prayers of the day. That day, the first Sunday of Advent, the news of President George H. W. Bush's death led the news. Tears came to my eyes as I read Marshall Ramsey's tribute to the 41st president in The Washington Post. (Dec. 1, 2018; https://wapo.st/2CqDJ8Q.) The cartoonist's tribute showed a TBM Avenger parked in the clouds with Barbara and Robin Bush waiting for his arrival.
I hadn't always known Robin's story. I had been blissfully ignorant of childhood cancer 19 years before, just as George and Barbara Bush had been five and a half decades before. When their second child was diagnosed with advanced leukemia, they had never heard the word. Defying their doctor's recommendations to tell no one and let Robin pass in three weeks or so, the three flew to New York City for the little girl to receive treatment. The hope they had for their blonde-curled preschooler was not to be. The Bush family called Robin's death their greatest sorrow. (The Washington Post. Nov. 30, 2018; https://wapo.st/2CrJkMt.)
On Dec. 3, 1999, I was catapulted into the world of childhood cancer when my then 5-year-old daughter was diagnosed with brain cancer. During that journey, I learned of Robin's story. I connected with the heartaches and hopes of parents of kids with cancer. Times were so different for leukemia then from how it was in 1953. It was because of people like the Bush family who defied the conventional propriety of silence and raised awareness and eventually money that made the difference. When my Tori was diagnosed with brain cancer, the condition had overtaken leukemia as the top cancer killer of kids. In the intervening half-century, childhood acute lymphocytic leukemia was considered likely curable. It was a tough road but curable.
I wasn't a president, or really felt much of anything almost two decades ago. Then again, George was not a president either when his daughter entered that world. I was a doctor. I wondered and hoped that telling our story, would perhaps make a difference even if it was just one.
Checking emails is my second Sunday morning ritual. Unexpectedly, a former resident's name flashed across my screen. He described a preschooler just like my Tori—the unexplained vomiting, the malaise, the horrifically huge posterior mass—and said he thought of our story. He was worried that bringing this up would upset me in some way. It was the opposite. It was a hope realized, that someone remembered and that our story made a difference.
In my follow-up email, I sent him a picture of Tori's tumor and how she looked now. In those early days, it took only one story, one good outcome, one picture of a kid almost two decades later smiling and living life to push back fear a little.
Sitting in church, I held the stories of three parents of children with cancer. As the first Advent candle was lighted, I thought how appropriate that it was hope.
Tip to Remember: Repeated, unexplained vomiting in a child without fever should equal brain tumor until proven otherwise.
My blog post this month is more personal than usual, but another tip to remember is that our stories connect us. These stories are remembered. Some stories hurt, bringing a flow of tears. Others give hope. It isn't always easy to share, but having that vulnerability with each other can make a difference.