Thirteen months later, I still cannot clear my mind enough to make sense of the six words that came through my phone and shattered our world.
“Connie, I’m afraid Adam has leukemia.”
Those first few hours after the call were a blur. While we were preparing to fight for his life, Adam was enjoying a pizza and watching the sunset over the Mississippi River with his girlfriend. Later, when we told him he simply said, “I’m not afraid.” He wasn’t, but I was.
By bedtime, I had dug my heels in, helped others put on protective gear, wrapped my 16-year-old son in love, and tucked him into bed with a kiss on his head. I wanted to hold him forever and forget that the word cancer had just crashed our world.
How does one sleep when the to-do list has been wiped clean except for one task “save my son’s life?” When my cheek touched my pillow, I looked at my husband and begged him to tell me it wasn’t real. All I could do was think about my son’s diagnosis and every path my mind wandered down led to fear. My only prayer was, “Help.”
The next morning my phone rang and a very southern voice of comfort said, “Hi, I’m Martha and I work with Dr. Pui at St Jude Children’s Research Hospital. How soon can you be here?” Before we left for the hospital, I thought to myself,
“I know we will lose our home, but please, God, don’t let Adam lose his life.”
On the morning of July 29, 2014, Adam was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood. He would need weekly chemotherapy treatments for two-and-a-half years. They also said St. Jude would never send us a bill for treatment, travel, housing, or food. I couldn’t understand the magnitude of those words yet. Suddenly, Adam had become a full-time cancer patient and I was one of the 16,000 parents in the U.S. told last year that their child has cancer. What I didn’t know was that one out of five of these children would die.
Adam’s road to a cure quickly became treacherous. His high white blood cell count made it hard to achieve remission and an allergic reaction to the key chemo drug needed to save his life caused pancreatitis. My six-foot-tall son weighed 100 pounds and was in the worst pain imaginable. As hard as I prayed, I couldn’t see how his frail body could beat this horrible disease. Dr. Ching-Hon Pui paced back and forth in Adam’s hospital room in silence. After awhile he said, “I will never let him down.” He hasn’t. He created a new path for my son even though this alternative chemo would cost $1.4 million. They soon realized Adam needed stronger, more frequent doses, but they weren’t sure his body could handle it.
Now it’s September 2015, and Adam celebrates one year of remission! To date, he has tolerated all 85 doses of the alternative drug at a revised cost of $2.4 million. The average treatment cost for an ALL patient at St. Jude is $500,000. Adam’s medical care is already close to $3 million with 17 more months of treatment to come.
Thanks to the immense generosity of St. Jude donors, our family has never received a bill from St. Jude for Adam’s medical expenses. Adam says,
“St. Jude values lives at all costs for NO COST to any family.”
Free from the financial worries I had anticipated, I got to hold Adam through his pain and now get to see him alive and thriving again.
Adam believes he needed to walk through the doors of St. Jude, because many of his new best friends are three and four years old. They can’t tell people just how terrible it feels to have and heal from cancer, but he can. Also, two of his closest friends have died and others have relapsed. In response, he created “Adam’s Army: Make Every Day Count.” With his Army backing him every step of the way, he has pledged to raise $100,000 this year and every year after until he raises $1 million. He believes that “each dollar raised turns into the miracle that will eventually end childhood cancer.” As hard as this journey has been, Adam has found his life’s purpose and inspires us every day.
Last week Adam had his senior picture taken. When the photographer placed the graduation cap on his head, he moved the tassel to the left side and told Adam, “That’s the side of the graduate. That’s who you will be next May.” I stood near a window looking through eyes filled with joyful tears at my son knowing, yes, he will.
This blog post is part of an annual series produced by The Huffington Post and St. Jude Children’s Research Hospital in recognition of Childhood Cancer Awareness Month in September. To see all the other posts in the series, click here. For more information about St. Jude Children’s Research Hospital, click here.
*To see this blog post on it's original site, visit Huffington Post's page here.