By Emily Cappo
The T-shirt was simple: solid black with the words “Pauliestrong” written across the chest in bright red.
“C’mon, put it on,” I said to my 11-year-old son Matthew.
“I really don’t want to,” Matthew replied.
He was usually an agreeable kid, so his resistance didn’t make sense to me. I explained that Paulie was having a tough time and we needed to show our support. I kept pleading with him until he finally burst out crying.
“I just don’t want to be reminded of that time,” he admitted.
I immediately let it go, realizing that I hadn’t been sensitive to how Matthew understood all too well why Paulie needed support.
Except then a few minutes later, Matthew picked up the shirt and put it on.
“Okay, let’s do this,” he said.
I smiled and acknowledged his sense of empathy and ongoing resilience.
I had it all planned out in my head: Matthew and Paulie would meet, form an immediate bond over what they had in common, have play-dates and be best friends. Matthew was 11; Paulie was 10. We lived 20 minutes away from each other in neighboring towns. Their paths would never have crossed if it were not for my friend Julie who lived around the block from Paulie’s family.
As soon as Julie heard the news that Paulie was diagnosed with a rare type of pediatric cancer, she called me, knowing I’d know how to support to his family since Matthew had been diagnosed 2 ½ years earlier with the exact same type of cancer. Suddenly, pediatric cancer – and this particular type of sarcoma – didn’t feel so rare anymore.
Without hesitation, I told Julie to offer my contact information to Paulie’s parents if they wanted to reach out and talk to someone who had navigated this crisis. I had hoped to help them feel less alone – because no one really understands what it’s like to watch your child undergo treatment for cancer unless you’ve been there. And no one understands that the only thing worse than having cancer yourself is if your child has it. Only a ‘cancer parent’ knows how upsetting it is to helplessly stand by as your child rides out days of nausea because he refuses to swallow pills to control it. Or, how a ‘cancer parent’ has to put on a happy face as their child is about to experience his first MRI. I wasn’t sure Paulie’s parents would want to talk to me because sometimes families are private or overwhelmed or don’t want to compare notes, but Paulie’s mom emailed me immediately.
Over the phone, she was lovely and honest and didn’t hold back. I was awed by how calm she sounded. I wondered if I appeared that way during the early weeks of Matthew’s diagnosis. Our first phone call was an hour and a half and I’m sure I could have talked to her all night. Before we hung up, I reassured her that she could call me anytime about anything. I heard from her again a few weeks later because she wondered if I had any suggestions on foods that Paulie might be able to stomach since he was rejecting almost everything. We had similar challenges with Matthew and I was eager to offer suggestions and support.
Although the two phone calls solidified my connection to Paulie and his family, I knew it was more than that. I was invested. I barely knew this family and yet, I cared so much about them. At the hospital, where Matthew and I still went for his check-ups every month, we saw a lot of the same kids each time we were there. Yes, they all had been or still were in treatment for cancer. But, that was all we knew. We didn’t know their names, where they lived, or their specific diagnoses. I’d always smile and say hello to the parent accompanying their child and we’d exchange that unspoken greeting of relief that our kids were sitting in the waiting room, rather than in a hospital bed upstairs. But, other than that, our connection ended there.
I only had one instance where a mother of one of the children in the waiting room sat down next to me and started chatting. Her son recently had part of his leg amputated, and yet this mom was more concerned with getting him ready for baseball season. After sharing with me what type of cancer her son had, she outright asked me for details on Matthew’s cancer. I knew I couldn’t hold back after she had been so forthcoming, so I told her. And, she began to rattle off statistics to me and reassure me that I shouldn’t worry. I was glad Matthew had his earbuds in and couldn’t hear her. Instead of appreciating a fellow cancer mom reaching out, I was hoping the nurse would call us inside soon so I could escape the intrusion.
But, with Paulie’s family our context was different. They reached out to me. I didn’t push myself upon them offering unsolicited advice, or at least I didn’t think so. And I certainly didn’t spew survival rates at them. I tried to be a good listener and only offered my opinion if asked.
I was grateful I could follow Paulie’s progress over their Facebook page, a closed group they set up to keep friends and family informed. Unfortunately, Paulie’s treatment was not going as smoothly as Matthew’s did, but his case was more complex and required a more aggressive protocol. Paulie had several unscheduled visits to the hospital, including one on Christmas Eve that lasted until New Year’s Eve. Despite these setbacks, Paulie’s parents were relentless in their hope and faith and even mustered the strength to start selling the “Pauliestrong” t-shirts to raise both Paulie’s spirits, as well as money for pediatric cancer research.
Before I snapped the picture of Matthew in the T-shirt, I asked him how he could show his support beyond just smiling. He shyly gave a two thumbs up. After we posted it, Paulie’s mom posted a reply to us with the comment, “we can’t wait to meet you” underneath a photo of Paulie giving a two thumbs up in return.
Right then, I could envision their friendship growing out of that first introduction over social media. I pictured them having play dates, then hanging out through high school, maybe even going to the same college. And I didn’t picture this just because they both had the same type of cancer. I imagined their friendship blossoming because they were both sweet, gentle boys who also liked Star Wars and sports. And, I pictured it because I needed to see them both in the future, after they had kicked cancer’s butt.
Finally, a few days into the new year, Paulie’s dad posted something positive: the chemo was working! The comments poured in with “woo-hoos” and “hoorays” and cheers that this would be their year. But then the following morning, another post appeared pleading for prayers, except this time it sounded much more urgent than ever before.
It doesn’t matter what specifically happened. What matters is that this young boy was taken from his family way too soon. I debated whether to attend the wake, since I had never met Paulie or his parents in person. But then my emotions won. I knew I needed to hug them both, despite the possibility of an awkward moment. Except there was no awkwardness. Paulie’s mom gave me a warm greeting and hugged me right back. As we talked, she held my arm and thanked me for our support. When I greeted Paulie’s dad, he too gave me a sincere hug and recalled an email exchange we had had about the intolerable, hard to sleep on hospital chair-beds. They were both poised and genuine and it made me wish I knew them before their child was diagnosed.
When a tragic event like this occurs, a very common response is, “there are no words.” But, I couldn’t accept saying that. I knew I needed to find some words to attempt to comfort this family. And I found them in pictures. The pictures that Paulie’s parents had posted on the Facebook page during his treatment. In every single photo, Paulie was smiling, whether it was from a hospital bed or at home. I knew I wanted Paulie’s parents to know that I noticed that. The fact that he was always smiling meant one thing to me; that Paulie felt safe and brave, knowing his family was always by his side. Doesn’t every parent want their child to feel secure even in the most difficult of circumstances? Paulie’s parents clearly gave him that gift, until the very end of his too short life.
At the wake, Paulie’s mom had said to me, “I wish you could have met him.”
“Me too,” I squeaked back between tears.
Although Matthew and Paulie did not have the opportunity to meet in person either, I know Matthew won’t ever forget him. And neither will I.
Emily Cappo is a writer and blogger at Oh Boy Mom (http://ohboymom.com), she has recently completed a memoir, “Hope All Is Well,” which chronicles mid-life loss, re-connection, and revelation.
For more information on Paulie’s story and childhood cancer, visit pauliestrong.org