“Some days there won’t be a song in your heart. Sing anyway.” Emory Austin
I meet them on a sunny autumn afternoon. Father and son greet me in the driveway, opening the door of their home wide, calling out to mom and two daughters, announcing my arrival.
I learn their names right off the bat. Valerie and Ben are parents to twins Garrett and Alissa, both 31, as well as a younger daughter Jenna, who is 28.
We sit around the dining table together, sun streaming in from the deck, laughter ringing gaily throughout the room. You’d never know what they’ve grappled with, struggled through as a family – unless you asked.
It seems like everyone you meet today either knows someone battling cancer, is a survivor themselves, or has lost a loved one from what the American Cancer Society estimated (back in 2015) would claim the lives of about 1,600 people daily.
If you’re wondering about the numbers, it equates to approximately 590,000 deaths due to cancer. In one year.
Garrett was 16 when he was diagnosed with ALL – Acute Lymphocytic Leukemia. The doctors at Albany Med offered him two options. He chose the second one – which would be harder and take longer – but would also allow the medical community to study the disease, its treatment, and his recovery.
“I knew it would be better if we could bring more education and awareness to this type of cancer,” Garrett tells me. “I felt it was the least I could do – help the next person suffering from it.”
Alissa, his twin sister, says she felt phantom pains all the time. “Whenever mom and dad brought Garrett to the hospital for a procedure, the wait was unbearable. I panicked. It felt as if I was going through it with him. I’d call dad to ask if my brother had this or that done to him that day. It was like I always knew.”
There was guilt, too. “I couldn’t understand why Garrett was enduring this hell while I was healthy. It was horrible. I cried a lot, felt defenseless and alone. What if the other half – the better half of me died? I couldn’t imagine life without him.”
Garrett knew his sister felt helpless. “I needed Alissa to understand this wasn’t her fault. We sat down one day, talking for a long time. I hugged her and said she was going to have to be strong and healthy for both of us.”
Chemo, shots, IV drips, 25 different pills every Friday – it sure seemed like it would never end. It was tough for the family to carry on with normal activities, but they coped, doing the best they could under the circumstances.
Thankfully, Garrett saw another birthday, then another, and yet another - growing stronger with each one. Doctors still keep a close eye on him, but cancer moves further away from his life every day.
Jenna talks softly, remembering a momentous day during December 2016. It was time to come off of her parent’s health insurance. “I was crying like a baby, complaining about how much it was going to cost. Man, I was young – I didn’t want to think about spending my hard-earned money on things like that.”
She had a long conversation with her dad, deciding it was the smart, grown-up thing to do. Securing medical coverage would help her worry less over the ‘what ifs’ in life.
Thank goodness she made that decision.
In January 2017 she was attending a press conference for her job as a sports anchor for ABC/Fox. By then, she was living and working in the Rochester area.
She wasn’t feeling well and recalls being drenched in sweat. Coworkers asked if she was okay and Jenna wasn’t able to shrug it off. Her temperature was 104. At the hospital, she was diagnosed with stage IV Hodgkins Lymphoma. Her team of doctors would be from The Wilmot Cancer Institute at the University of Rochester Medical Center.
The family was in disbelief. How could this have happened again? How would they ever get through the journey of another child suffering from this terrible disease?
“Friends and family rallied around us both times,” Jenna tells me. “They brought food, lent an ear, offered a helping hand. We were never alone.”
At first, Jenna says she was angry with the news, grappling with the questions of “Why me? Why our family? Why a second time?”
She’d shared a bedroom with Alissa over the years, the sisters were very close, even after she’d moved away. “It was so hard for me to watch,” Alissa says, tears brimming from her eyes and rolling down her cheeks. “Once again – I was healthy and a sibling wasn’t. Why?”
It was terrifying for Garrett as well. “I felt terrible, all-consuming guilt. Memories of my own personal journey with cancer came flooding back – I didn’t want my younger sister to suffer any of what I’d gone through. I was her big brother, yet there was nothing I could do to spare her from what I knew was ahead.”
Jenna’s journey was a tough one as well. Some days were good, others were bad. 12 rounds of treatment came wrapped up in a lot of different emotions, sickness, depression, hope. It’s an experience she wouldn’t wish on anyone. “I learned how tough I am though,” she tells me, “how strong my family is, how supportive my friends are. Cancer taught me more about the human spirit than any other experience could have.”
Over the last two hours, I feel as if I’ve opened a wound that’s only just scabbed over. I search five sets of eyes and see raw emotion. When they speak their mouths quiver. The love they have for one another is evident and very powerful.
“It’s important to talk about cancer,” one of them tells me.
“Cancer changes your perspective on life,” another one says, wiping tears from her face with the back of her hand.
“Look,” Garrett pipes in. “You can have a bad day – you just can’t live there.”
Valerie and Ben hold hands and look at each other. “It’s been an emotional roller coaster. We’re just so grateful the kids are okay. They’re all doing well, have great jobs, keep up with doctor appointments, and are closer than ever. Most importantly, they’re living the best lives they can. We’re extremely proud of all three.”
Each one hugs me tightly as I prepare to leave - with bear hugs that don’t need a single word.
Jenna points to her parents. Garrett and Alissa follow suit. “These two,” she tells me. “They’re why we’re still here. They wouldn’t let us give up or wallow in pity. Rock-solid people, our parents. We’re so lucky to have them in our corner.”
I shake my head ‘yes,’ tears brimming from my eyes as well. They sure are.