September is Childhood Cancer Awareness Month. As with most "months”, it doesnʼt mean much without a personal connection. And this is one where I have a very personal connection. My family has lived with childhood cancer since 1995. This is our story.
Our family has three sons. Two of them have always been athletically inclined. In 1995, one was going into 10th grade, the youngest, 9th grade. This is important because in our school, "real” football, as defined by the use of pads and being allowed to hit someone, started in 9th grade. Younger brother, Joel, was excitedly looking forward to starting real football in August that year. And, Iʼm sure, hoping for the chance to have a sanctioned go at older brother in pads.
In June though, he developed some joint swelling. He was a Little League catcher, and a frequent backstop for foul balls, so no one was surprised. Then he developed other, more worrying symptoms. Multiple trips to the doctor and numerous blood tests offered no reason for his increasingly ill health. Finally, in late July, we heard the words no parent should ever hear, "Your son has leukemia.” The only coherent thought I recall from that moment is, "Our lives will never be the same again.” Truer words were never spoken.
The first few days were a surreal blur of tests, surgery and serious conversations with medical experts who suddenly were the only ones standing between our son and death. And throughout this blur of fear and panic, that 14 year old boy had only one concern, which he voiced repeatedly, "Are you sure they wonʼt let me play football this year?” "Ask them again, Mom!” We began to worry that there was something wrong with the boyʼs brain. We were wrestling with life and death decisions, he worried about playing 9th grade football. This early insistence that leukemia would not define his life would set the tone for our familyʼs life going forward.
We spent the next week in the hospital. I say "we” because when a child or adolescent has cancer and they are
receiving treatment 125 miles away from home, everyone in the family is involved. We were lucky in that our other sons at age15 and 16 were fairly independent. After that first week, we came home to begin our new life, one that would revolve around daily pills, blood tests, weekly visits to the clinic, spinal taps and a new appreciation for how many germs there are in the world that now held the power to kill our son. Leukemia treatment is a fine dance of chemotherapy that suppresses the immune system. Too much and the child can die from a common cold that becomes pneumonia. Too little and the leukemia will kill the child. There are no easy choices; there is a lot to worry about. Does he have a fever? If his hair doesnʼt fall out, is he getting enough chemo? There are 3 am questions... Did we do something to cause this? Was it the flea bomb we used? And the 4 am questions...Will he be here to have a 16th birthday party? Are our other sons suffering from lack of attention? Will we have to plan a funeral for our son? No answers, just questions and doubts and a level of anxiety that never went below high alert level. There were dark days. Most of them fade, but some remain as sharp as ever. Hearing our son, in severe pain in spite of the morphine, whisper in the night, "Mom, am I going to die?”, is not something you ever forget.
This went on for over 3 years. The first time. (Adult cancer treatment usually lasts weeks or months.) When we
came out of the initial blur, we realized that this was clearly going to be a marathon and not a sprint. We learned to deal with what we had to: keeping track of chemo pills and nausea and steroid induced hunger and
emotion. The medical team encouraged our son to live as normal a life as possible. So, he did play football, not that 9th grade year, but the next and every year through high school. After 3 years of treatment, we had 6 months reprieve, which corresponded with his last semester of high school. Welcome normalcy for a kid who had been on chemo his entire time in high school!
Then just before graduation, he was diagnosed with a relapse. Relapse was a particularly cruel blow. Weʼd turned our life upside down and done everything we were told for 3 years, and it came back anyway. The options were fewer, the odds longer, less than 50% now. The whole family was typed for a bone marrow transplant. His brother matched. The chemo started again. Plus radiation. We spent over 100 days in the hospital in the first 6 months. He went over a year without hair. College was put off. He had to watch all his friends head off to college while he lay in a hospital bed.
The unfairness of it all was crippling if we dwelt on it. We tried not to. The college football team that had invited
him to play, extended their offer for the next year, giving him something to look forward to. We carried a mini football helmet and purple pom-poms into every hospital room that year and they sat on a window ledge, a reminder that there was another life waiting for him after this hell of treatment. His oncologist encouraged him to read, read, read during his year off school. Some clinic visits felt like a book club, without the wine. While still on treatment, he headed off to begin that postponed first year of college. And played football, until the demands of classes and nerve damage in his hands and feet from the chemo took their toll. His treatment , toxic on itʼs own, included 48 spinal taps, 13 bone marrow biopsies, 35 blood transfusions and thousands of pills. All told he was on or recovering from treatment for about 6 years, from age 14 to 20.
During this journey, we found that our sense of humor was a critical sanity saving skill. We named the puke bucket that was always in the car. We put plastic fish in a spare IV bag just to play with the nurses. We brought a Nerf golf game into the hospital room and challenged all comers. Not the PGA, but the 3rd year residents liked it.
We discovered the breadth of human ignorance and cruelty. When the meds kick in and a 9th grader loses his lunch in the junior high lunchroom, kids can be mean. When youʼre driving to clinic with your exhausted, bald, puffed-up-by-steroids son dozing next to you and a car load of teenagers at a stoplight points and laughs, your heart breaks and you want to cry or get out and kick ass, but you canʼt, so you just slow down and let them pull away. Hoping that someday they realize the depth of their cruelty and that they never have to walk in our sonʼs shoes. You learn to grit your teeth when people say, "Oh, thatʼs the good cancer, right?”
You also discover the full measure of human compassion and generosity. Former coworkers delivered dinner to our house two days a week. Parents of our sonʼs friends drove them 2 hours to the hospital so they could visit. Friends of his brother made the long drive to visit. Co-workers donated vacation time so my paychecks still showed up for months when I wasnʼt working. One memorable evening while hospitalized, he was given a pass to attend a playoff football game. He was a volunteer assistant coach at this point, as heʼd graduated. Normally passes were for 2-3 hours. We had to drive that long just to get to the game. When we finally returned to the hospital at 3 am, there were three nurses waiting, not to complain that we were gone too long, or worry about
whether he was ok or not, they wanted to know how his team had done, chatted excitedly with us, then sent him off to his room, treating him like a normal teenaged football-crazy boy. Bless them!
We are one of the lucky ones, our son is now a healthy young man. Our family walked through the dark valley of cancer and emerged intact on the other side. Many do not. Facing the loss of a child gave us the gift of perspective. Life is tenuous and precious. We learned to appreciate today and the people in our life, for we donʼt know what tomorrow will bring. Sure, it sounds like a beer commercial or a country song, but itʼs a hard won and genuine perspective. When youʼve spent years wondering if your child will live or die, itʼs easy to sort out everyday challenges and conclude, "This ainʼt nothinʼ.ʼ”
Iʼve chosen to share our story during September, Childhood Cancer Awareness Month. The voices of children and adolescents who deal with childhood cancer and their families voices are rarely heard because, frankly, theyʼre way too busy just keeping their child alive and their family together to do much else. Hopefully, by sharing our journey, we will help spread the word that children do get cancer and while some live to tell of it, some do not.
This is part two of a two part article about Childhood Cancer Awareness Month. Part 1 ran Sept 3, 2010, Issue 499.