When Your Child Has Cancer, It Feels Like There Are Only 'Wrong' Choices
Let’s play a little “Truth or Dare.” I choose Truth. OK, so the truth is I struggled in my role as Matthew’s caregiver. Being his mother came easy. Loving every ounce of him was even easier, but the author of “What to Expect When You’re Expecting” left out the chapter on what to do when your kid gets cancer.
When Matthew was diagnosed I was forced to make a ridiculous amount of decisions for him, each one came with a heavy weight. Matthew’s doctors and nurses would always say to me, “There is no right or wrong decision.” From their perspective maybe there wasn’t, but from where I stood I had everything to lose.
In those first months of diagnosis, I rarely exposed myself to the outside of our room. I kept most people out. Our medical team thought I was kind of “losing it”…they would come in our darkened room, open the curtains and tell me I needed to get Matthew out more. The hospital pastor, psychologist and our social worker started stopping by more, and I was asked to start dressing Matthew in regular clothes. I found all of this advice for the living to be perplexing. We had cancer, and it was super bad. Matthew was connected to machines and had tubing all over the place. Onesies are not created for babies with medical complications. However, I wanted the best for Matthew and so I listened to the cancer experts.
I carefully picked out the very first outfit my baby would wear while fighting cancer. I was surprised by the hope that arose from that simple wardrobe change; I couldn’t help but admire my handsome boy in real clothes.
The simple luxury of this normalcy reminded me of what we were fighting for and not just what we were fighting against. Soon we were zipping around the hospital in all sorts of spiffy outfits. I suddenly found myself more committed to this new life because I knew one day this all would turn into a cancer survivor story — a story Matthew would tell while wearing his favorite concert T-shirt and old worn pair of Levi jeans.
But then something happened. A beautiful, bald 12-year-old wonder came into our world. It was hard to not stare at this cancer warrior; her features were aligned in such a way that it was captivating how perfect a face could be. She was a funny, charismatic fashionista whose bald head was always adorned in glittery tattoos that matched her nails. So many people adored this fancy young lady, and we all loved watching her glide around passing out “love” to all her little cancer friends.
One day as we all visited in a common area of the oncology unit, our new friend spoke words that would weigh heavy on any cancer parents’ heart. As we talked about our day and procedures she blurted out, “Mom I don’t want to fight anymore.” The expression her mother made was not one I could accurately describe, but quickly the room filled with fighting words. Fighting cancer was old news to this beautiful girl, and her third relapse meant harsher cancer treatment. I watched as her mom pleaded with her child to not “give up.” I then watched as this child pleaded with her mom to just be OK. It was a brutal moment in 1 North, and from that day forward my career as Matthew’s caregiver would be haunted by this little girl with a brave voice. When Matthew relapsed and I found my family at a similar cancer crossroads of whether to continue toxic cancer treatment or not, I remember purposely quieting this little girl’s voice that now lived in my head. She was distracting me from my new goal of Matthew becoming a slim chance cancer survivor.
My husband was always much better than I at looking at our big cancer picture. He wasn’t sure a further fight was in Matthew’s best interest. In those raw tortuous moments, my husband became the voice for our child who could not advocate for himself. I thought about this perspective for a moment and then I indulged in the big, “What if,” …what if Matthew survived? I asked myself could I live with this huge “what if” for the rest of my life?
Would I one day conclude that Ron held us back from surviving cancer? Would I be able to live with “letting” my child die rather than try everything to save him?
I decided, for me, I could only live with knowing Ron and I tried everything to save Matthew’s life. My trusting husband agreed. Matthew lived for another year — another glorious year where each day came at a big cost because every “extra” day my Matthew lived, the quality of his life decreased. In that year’s time all the pieces that made Matthew who he was started to be stripped away, and one broken day I allowed that little’s girls voice back in. She helped me be brave as I signed Matthew’s “do not resuscitate” order.
With that signature, my dream of Matthew being a cancer survivor ended. The doctors and nurses were right. There was no right or wrong choice for parents like me. There was only lots of wrong options. I believe the real solution is to make funding for all types of childhood diseases a priority.
Photo submitted by contributor.