We entered the “I can’t imagine world” in September 2014. It was one week after our son’s sixth birthday. Michael had just enjoyed an exciting first week of kindergarten, complete with riding the bus, new school supplies, and his special desk adorned with his nametag. We went to the doctor with what we thought was a simple eye problem, and two days later learned that Michael had a tumor in his brainstem. As we sat in the small meeting room with the neurologists and oncologists, and they delivered the news, everything started to spin. I was terrified that my little boy was about to face brain surgery and asked when it would occur. The doctors stared back with a long silence . . . there would be no surgery.
Though I am sure it was only seconds, it felt like an eternity that my husband and I sat there trying to fill in the blanks. If there would not be surgery, how would we get rid of the tumor? What are they saying? They can’t be saying . . .
Michael was diagnosed with a tumor called diffuse intrinsic pontine glioma, known as “DIPG.” Hundreds of children, typically between 4 – 11 years old (though there are certainly younger children and young adults), face this disease every year in the U.S. alone. Children generally survive only 9 months from diagnosis, with overall survival near 0 percent.
Sharing the news of your child’s diagnosis, even with your closest family and friends (perhaps especially
with your closest family and friends), raises its own difficulties. While yearning for support and compassion, telling people that your child has cancer can cause extreme anxiety and heartache. Saying the words aloud pushes you into a reality where there is no turning back, and watching the pain and hurt that others feel for your child somehow amplifies your own.
My fear of sharing Michael’s diagnosis was exacerbated by the horrifying thought that if I told people Michael had DIPG, I was essentially telling them that he was going to die. One Google search would reveal the terrifying numbers, and I did not want everyone we knew and loved to give up on Michael.
As the news of Michael’s illness spread, we received an outpouring of support. We saw the true generosity and good in people during the time Michael was sick. From the volunteers who planned Michael’s Make-A-Wish trip, to the strangers who sent cards and gifts, to the friends who made sure that we and our extended family had meals every single day, we had amazing help that lifted Michael’s spirits and allowed us to focus on caring for his constant needs.
Unfortunately, DIPG is a relentless, fast-acting tumor that not only rapidly changed Michael’s appearance (thanks in part to the steroids he had to take to reduce inflammation) but also stole many of his motor functions in a matter of weeks. There was no easing into the childhood cancer world with this monster, and there was no way to delay informing people of our awful truth. So, we told people, and then there was the inevitable: “I can’t imagine.”
There is a lot to unpack in those three words. I believe the main thrust is an acknowledgment that learning your child has cancer and fighting through all the pain and suffering and sheer terror that accompanies your child’s battle is simply awful. “I can’t imagine” is a way to elevate the childhood cancer fight into its own category of awful and acknowledge that those who have not personally experienced such a fight with their own child probably will not be able to fully understand what childhood cancer parents go through.
To be honest, there were countless times during Michael’s sickness when he was feeling terrible or enduring a painful and scary treatment that I would think in my own head that “no one (other than other parents going through it) could possibly imagine how horrible this is.” There were times when we would be sitting at home trying to “play” with Michael when he could not walk and had only one hand that could move. There were times when he would try to speak and be so upset and frustrated because the only ones who could even come close to deciphering what came out of his mouth were me and his father, and we often failed. There were the times when the evil tumor took over all his bodily functions, and he would sadly acknowledge that his pants were all wet and he needed new shorts, despite the fact that he potty trained easily at 2 years old (four years earlier). Yes, during those times, through the agony, the anger, the fear and the pain, I often thought that no one could imagine.
But “I can’t imagine” can also be a way to put childhood cancer in a little box and not really engage with what families are going through because it is so bad that it is hard to think about. It can be a way to keep the precious happiness of your own bubble of healthy and happy kids intact without the worries of those “other” families who are not so fortunate. It can be a shortened version of “I can’t imagine, and I am not even going to try.”
This less positive version of “I can’t imagine” unfortunately also reinforces the feeling of isolation that many childhood cancer parents feel. The loneliness begins when your daily life begins to revolve around medications, treatments, and symptoms instead of baseball, swimming, and play dates. If you are in the unfortunate group that has lost a child, it persists with the daily experiences that now take on a different meaning and impact. On top of losing your precious child, you lose your old self. The childhood cancer parent can occupy the same physical space as everyone else, and go through motions that may appear “normal,” but still feel inside that they are in what I like to call our “alternate universe.” The alternate universe where the blinders are off and the realities of suffering that children can face exists as an ever-present weight, making each interaction with people and the world simply different than it ever was before. The hands-off, disconnected version of “I can’t imagine” worsens the separation between the childhood cancer parents and the support system of the “normal” world that they need so much.
My plea is that for every time you feel yourself thinking or saying “I can’t imagine” that you recognize that the reason for those words is that childhood cancer presents what is the worst fear for most parents: their children’s mortality. Instead of turning away from that understandably difficult topic, I urge you to instead do the hard work of imagining. Imagine that tomorrow you suddenly learned that your healthy child had a devastating childhood cancer without any known treatments. Put yourself in those shoes and think about what you would want the most: you would want a chance to save your child. And, you would want everyone – from your closest friends to strangers you have never met – to be by your side in vigorously trying to do better for kids facing cancer.
My challenge is that you act today as if you are going to get the world’s worst news tomorrow. Put in the effort, the passion, and the dedication now. Help make an impact so that the parents that lose the lottery and find themselves in that small room with a bunch of doctors telling them they found cancer in their child have options and hope. Going forward, when you say, “I can’t imagine” when you hear devastating news about a family you know and love, follow that with “But I am going to be there with you every step of the way, and I am already fighting with you for a cure.”
Jenny R. Mosier is executive director of the Michael Mosier Defeat DIPG Foundation