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READ MOREPublished on September 5, 2019 in In the Community, Take Action
Guest Author: Rebecca Connor
On a family vacation in 2011, Mac tried to catch a seagull. Using his boogie board to shield his movements, he inched his way across the sand, closing on his target. With the determination and strong-will that defined him, Mac patiently stalked his target for 20 minutes, taking great care with each step as to not spook the bird. Unfortunately for Mac, on this day we shared the beach with his two-year-old cousin — who adored Mac, but didn’t yet quite share the same knack for stealth. Barreling across the beach, she boomed, “Mac! Mac! What are you doing?!?” Spooked, the seagull took flight.
Mac was kind and thoughtful, just like his best friend and older brother, Liam, but the seagull saga captured Mac’s unique spirit in a nutshell. Our little six-year-old was all about action.
The fondness of that memory was also reflective of something else at the time – just how perfect life was for our family. My husband Bill and I had two incredible sons, great friends, and I had recently begun my dream job as a second-grade teacher. While aware of childhood cancer through news stories and second-hand accounts, my worries at the time were much like those of many parents that hadn’t experienced the horror first-hand: Would we have enough money in our savings account to get by? Will these boys ever learn to pick up after themselves? Will I ever finish all of our laundry?
That all changed on January 17, 2012.
I had gone to work while Bill stayed home with Mac, who had been having intermittent headaches and nausea for a couple of weeks. Our pediatrician assured us it was just a stomach bug that had been going around and that it would simply run its course. I called at lunch to check-in and to get the number for Mac’s ophthalmologist, Dr. Chen. He had a routine eye appointment scheduled to review his prescription and the progress of his lazy eye, which we had been patching. Mac had convinced himself that Dr. Chen was going to tell him that the patch, which he hated wearing to school, was no longer needed. So, despite not feeling well, Mac had informed Billy that he wanted to keep the appointment. And, if Mac had made up his mind that he was going to that exam, he was going! (Dr. Chen – based in Boston, Massachusetts – keeping only limited hours at the office nearby our home, some 30-miles northwest of the city, played a determining factor for Billy and me, as well.)
As we sat in the exam room later that day, I filled Dr. Chen in on his assumed stomach bug and related symptoms. Within minutes, she was asking me to repeat his symptoms again, and though her back was to me, I could see her whole demeanor change. I explained the headaches, nausea, and trip to the pediatrician. As she began talking to me about what she saw in Mac’s eyes, I could see the concern on her face. What she saw was highly unusual, she explained, and it indicated that there was a tremendous amount of pressure in his brain. She said he needed an MRI – not, “he should get one” – he needed one, and that he needed it right away. Dr. Chen stepped out of the room, returning shortly thereafter to inform us that she had made arrangements for Mac to be seen in the emergency department at Tufts Floating Hospital for Children in Boston as soon as I could get him there. My head was spinning.
Before I knew it, an ER physician was entering the small room at the hospital, closing the door behind him, and shutting off the television. I knew the news was going to be bad when he did this, but nothing prepared me for the words I was about to hear. He said, “I’m sorry. These are words I never want to say to parents.” He reached over, placed his hand on my shoulder, and said, “Your son has a very large mass on his brain. He will be moved upstairs to a room in the Pediatric Intensive Care Unit.” He recommended brain surgery for the next morning so they could get a better understanding of the mass.
I felt like the wind had been knocked out of me. In one instant, the world I knew ceased to exist.
Mac was ultimately diagnosed with glioblastoma. The prognosis was dire.
Mac endured three brain surgeries, 33 treatments with radiation, several inpatient rounds of intense chemotherapy, and many more outpatient chemotherapy infusions.
As the treatments waged a war on his body, we learned to live in a world with side effects, central line ports, and feeding tubes. We prayed that the potency of these poisons would at least be enough to destroy the cancer cells. We rubbed his back while he vomited and watched as our vibrant little boy lost weight, his hair, and become pale. All the while, Mac never once complained about pain, hospital stays, or missing holidays at home. He never once asked, “Why me?” He simply faced each new challenge with a strength I had never seen before. Just like with the seagull, Mac kept inching forward in pursuit of his goal.
On April 19, 2013, Mac was brought home on hospice. He was no longer responding to treatment. We were out of options. The seagull had again flown from his reach.
We kept Mac as comfortable as possible, but there is nothing comfortable nor peaceful about watching your seven-year-old son die from cancer. Thinking back to that day, it felt a lot like someone had reached inside my chest and ripped my heart apart. I would have given anything to trade places with him. Given anything to take away his pain. Given anything to go back to our lives before that horrific day in January.
Mac passed away on May 11, 2013. He is deeply missed every minute of every day. Mac touched the lives of countless people during his short life. He endured both physical and psychological pain with a positive attitude and smile on his face. He was never afraid to be his own person or live each moment to the fullest. We live each day honoring his memory and trying to continue his legacy.
While he doesn’t speak much about it, I know Liam was changed by the loss of his best friend. Now 16, Liam in many ways is the typical high schooler; learning to drive, preparing for graduation and the pursuit of a career in his chosen field. But Liam’s experiences throughout his childhood have forever changed his outlook and perspective. He remains a thoughtful, sympathetic, and kind individual – that’s just who he is at his core – but he has spent so many years without his brother by his side. This year, Mac has been gone for as many years as he was with us. That is what childhood cancer does. It changes lives, and families, and futures.
My husband Billy and I have two incredible sons, and we are so honored to be their parents.
September 2019 is Childhood Cancer Awareness Month in the United States. Visit braintumor.org/CCAM to learn more about childhood brain tumors and how you can get involved with our efforts to support all those affected by this disease during Childhood Cancer Awareness Month.