Written by Michelle Calado (Sebastian’s mother)
March 3, 2017
“Mom,” Sebastian – the oldest of my three boys – said in his most serious tone. “I’m ready to go outside again.”
I have always known Sebastian to be an old soul, but that moment – more than two years ago, now – caught me by surprise. It’s amazing just how much you can learn from a six-year-old.
I can still vividly remember everything about Sunday, July 27, 2014 – or, as I refer to it, the darkest day of my life. The day Sebastian was diagnosed with cancer; a mother’s worst nightmare.
A few weeks before, my husband and I noticed a lump on his neck. Aside from some mild coughing, we didn’t think much of it. The pediatrician sent for some blood work, and things kept coming back okay. Still, the lump made us uneasy, and we scheduled a biopsy just to be safe – but just before his appointment we discovered another lump, this time on his chest. Moments later we were in the Emergency Room at Hasbro Children's Hospital in Rhode Island, and later that night doctors broke the bad news to us: T-Cell Leukemia. X-rays showed a mass in Sebastian’s chest blocking 90% of his airway. He would need to be admitted right away.
Until you experience it first hand, nothing can prepare you for the immediacy of cancer. There is no onramp, no training. One day you are playing at the beach, and the next you find yourself making arrangements to spend 30 consecutive days quarantined in a hospital room, desperately trying to distract your little boy from the pain and fear that accompanies pediatric cancer treatments.
That first day in the cancer ward was the most difficult, and it was one of the only times I can remember Sebastian breaking down – but it wasn’t because of a needle or any physical pain. He just missed his brothers. He missed his friends. He missed his home. He just missed being a happy kid. My heart broke for him.
At that moment I made a pledge – no matter how bleak things got, and no matter how anxious I felt, Sebastian was going to live a happy life. His favorite cartoon-printed sheets covering a hospital bed. Transforming a hospital room into a Toys-R-Us. Whatever it took, we were going to keep a smile on his face.
That meant I couldn’t leave his side during the month he would need to spend in the hospital, regardless of the financial strain it put on our family. You see, Sebastian’s diagnosis came just six months after the birth of our youngest son, so it was a very vulnerable time for our family. I had returned from maternity leave just three weeks prior to his hospitalization, so all of my benefits had already been exhausted.
Spending each day and night with Sebastian meant that my husband was our family’s sole earner, but he, too, had to take time off from work to care for our other two sons at home – a six-month-old and an eighteen-month-old. Needless to say, it was a difficult time for us – but as long as Sebastian was happy, we would deal with our financial burdens down the road. He was our priority.
Nearly a month later – after countless chemotherapy sessions and spine injections – the masses in Sebastian’s body were finally under control. His cancer was in remission. Most importantly to him, it was time to go home.
A month’s worth of treatment had taken a toll on his four-year-old body, though, and Sebastian spent that first week back at our house recovering. He barely had the strength to walk when we left the hospital, and we fully prepared for a long journey back to the energetic, fun-loving Sebastian we knew before his diagnosis.
Though we were relieved to be back at home, a cloud remained over our heads – a constant fear that we weren’t quite out of the woods yet. Relapses are all-too common for pediatric Leukemia patients, and we knew Sebastian was going to require weekly outpatient treatments for two full years. At the beginning of Sebastian’s diagnosis, I thought all I wanted was for him to be able to go home – but once he did make it home, the fear and anxiety of his uncertain future remained.
Then, one day – when I least expected it – Sebastian gave me the greatest gift I will ever own: Hope.
“Mom, I’m ready to go outside again.”
Sometimes we pass-off the way kids think as “simplistic” – but, with one single sentence, Sebastian showed me something my adult-mind could not see. I was too busy worrying about the road ahead – the things I cannot control – to see that happiness is present everywhere around me. Around us all.
To Sebastian, the only thing standing in the way of happiness was our front door – he just needed help unlocking it.
And outside-we-went! – as if the previous month of needles, stomach aches, and scary machines were nothing more than a speed bump along Sebastian’s journey. He spent the entire day playing in the park, laughing at everything, and smiling ear-to-ear. Picking right back up where he left off. Living a happy life.
As the months went on, Sebastian continued to get stronger and healthier, though he still required frequent trips to the hospital for treatment. As much as I tried to return to my career as a Certified Clinical Hemodialysis Technician at a local hospital, Sebastian still required constant care. I could pick-up days here and there, but going back to work full-time wasn’t a reality because of the uncertain fluidity of Sebastian’s health.
Whether you are personally battling cancer and too sick to work, or you are sacrificing an income stream to take care of a child battling the disease, the last thing you have time to worry about are bills. You wish you could just hit the pause button on household expenses until you, or your loved ones, are healthy again – but, unfortunately, that’s not the case.
Around the beginning of year-two of Sebastian’s outpatient treatment, our family’s financial burdens began to catch up with us – particularly during one difficult month. We were doing everything we could to provide for a family of four young boys, including the acute constant care Sebastian’s ongoing treatment required. Things were getting tight, and we really needed help with our mortgage.
On Sebastian’s treatment days, we would gather at the hospital’s big, open playroom along with all of the other “cancer moms,” as we would call ourselves. Parents would sit around, talk about our struggles, what our kids were going through, and support each other. One afternoon, a parent told me about a fun day their family got to spend on one of Boston’s famous Duck-Boats. As any parent of a child battling cancer will tell you, finding time, and money, for fun outings is hard to come by.
One parent went on to tell me about the Joe Andruzzi Foundation – a non-profit organization that not only provides financial assistance to struggling families in need, but also organizes fun events called “(Up)Beat Outings” to help patients escape cancer’s emotional burdens for an afternoon.
I had never heard of an organization like that, and the Joe Andruzzi Foundation’s mission – focusing on the power of positivity and living a happy life no matter the circumstance – immediately resonated with me and our family’s situation. Within hours I was working with a social worker at the hospital to apply, and just days later a check came in the mail to help pay part of our mortgage bill.
My husband and I were so thankful for their financial help, but soon it went much further. The Foundation invited our family to the circus in Boston, and surprised Sebastian with the chance to be an honorary ring-leader for the night. He still talks about it to this day.
Watching the joy on Sebastian’s face that night was a “wow moment” for me – I remember thinking, they just get it. As a parent caring for a sick child while also trying to make ends meet, there is nothing in the world you want more than for your kid to feel like a kid, even if just for a moment. The Joe Andruzzi Foundation helped us save our house so that our family could live a happy life together in it. They have inspired us to want to give back to others; to pass on hope to families like us and let them know that life exist, not just after cancer, but during it as well. They reinforced our belief in positivity and the power each of us holds over the fears and anxieties that accompany a cancer diagnosis. They reminded us that as long as hope exists, the road to a happy life awaits.
On September 6, 2016, our warrior – Sebastian – received his final treatment, bringing an end to a two-year-long journey we never expected to be a part of. That’s the thing about cancer: you don’t choose it, it chooses you. But that doesn’t give it the right to control your happiness.
The fear-of-the-unknown will always live within us; it’s something our family has accepted, but not something we will let hang over us. It’s not something we will waste another day worrying about. Cancer attempted to control our lives for more than two years, but it failed. It tried to threaten our financial future; it couldn’t. It tried to tell Sebastian he couldn’t roar like a lion in front of thousands of people at the circus; he did. It tried to strip us of our hope; it never will.
We decide when we’re ready to go outside again. We, alone, make those choices – and we choose to live a happy life.
You can too – just start with a smile.
– Michelle Calado, Joe Andruzzi Foundation Grant Recipient