An Almost Friendship Between Two Boys

Posted on June 1, 2016 by CNF • Posted in Articles Page, Highlights, Slider Content • Tagged boys, cancer, Emily Cappo, mother son, pediatric cancer, tweens • Leave a comment

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

Sibling Rivalry: When Fighting Became A Good Thing In Our House

Posted on April 1, 2015 by CNF • Posted in Blog, Featured Blog Posts, General • Tagged Emily Cappo, family, fighting, motherhood, pediatric cancer, sibling relationships, siblings • Leave a comment

By Emily Cappo

Their frequent fighting had become so normal in our house, I think I would have thought something was wrong if they didn’t fight each day.

I grew up with one sibling: a brother, who was two and a half years older. Looking back, I’m pretty sure my parents had it easy with us. Of course we fought like siblings often do, but in general we got along and if we didn’t, our brother/sister fights were usually relatively tame. And now as adults, my brother and I are the best of friends.

I always assumed I’d be a mother to a boy and a girl, because that’s what was familiar to me. I also always assumed I’d only have two kids, because that too was what defined a family for me.

I was wrong on both counts.

I have three kids—not two—and they are all boys. The five of us joke that we are just like the family in “Diary of A Wimpy Kid.” In these books/movies, the mother is a writer who has a column about parenting. The father is a businessman who loathes that his sons play too many video games. The oldest son, Roderick incessantly picks on his middle brother Greg. And, Manny who is the youngest, seemingly receives all the ‘special treatment’ because he’s the baby of the family. Yup, sounds exactly like us.

Except then one day, our family was hit with a crisis that threw us into a tailspin. Suddenly, our rambunctious and occasionally chaotic family looked nothing like the Wimpy Kid family dynamics.

My youngest son—our “Manny” of the family—was diagnosed at the age of 9 with a rare type of pediatric cancer. His treatment required 43 weeks of chemotherapy plus 6 weeks of radiation. Needless to say, it was a long, tough year, but through the entire ordeal, our son showed us what true resilience looks like. He is now back to being a regular kid, going to school, playing with friends, and participating in sports.

Before my son’s diagnosis, my boys would constantly play fight, real fight, and basically instigate any kind of physical activity that frequently ended in bloodshed. In other words, my house may as well have been converted into a boxing ring. With three sons ranging in age from 9 to 16, I was always yelling at them to stop pushing, punching, wrestling, and chasing each other. I’d sometimes wonder if I were cut out to be a mom to three boys. My anxiety would remain in overdrive, worried about whether I’d be headed to the ER with a sibling-induced concussion or broken bone.

After my son’s diagnosis and during his treatment, my two older boys knew that they had to be more gentle, both emotionally as well as physically. Thankfully, they were old enough to understand that their little brother was in a “hands-off” protective zone.

Occasionally though, my sons would forget. Someone would get mad at someone else and before anyone could remember to leave my little guy alone, the fighting would begin. Normally, I’d put on my referee hat and start screaming at them to stop, even though there was no chance of them listening to me. Eventually, someone would get hurt and then it would be over. In fact, their frequent fighting had become so normal in our house, I think I would have thought something was wrong if they didn’t fight each day.

But, when my son was in treatment, the constant fighting and waiting for the inevitable injury was not an option. One day the boys were going at it and it was particularly intense. I thought about breaking them up myself, but then I quickly thought of saying something that I knew would stop the fighting immediately and keep me out of the ring.

“His platelets are low!” I screamed. [Note: This point may have been mildly exaggerated].

The boys instantly separated, even though the two bigger dudes had no idea what a low platelet count was. All they knew was that it sounded important and they did not want to be responsible for harming their little brother, who was already dealing with a low platelet count, whatever that was. I think I caught a discrete wink and smile from my youngest son, who knew that his platelets were not in fact, too low.

Once everyone calmed down, I explained what low platelets were and how an injury, especially one that involved bleeding, could be dangerous.

From then on, and yeah I know this was a little sneaky, I decided that my son would have low platelets for the rest of his treatment. If I saw another fight brewing, all I had to say was, “Platelets!” and it was like a magical cease-fire.

His platelets WERE always on the lower side, although never low enough to need a transfusion. Even so, I justified my little white lie to keep the peace in the house.

Recently, my middle son and youngest son were play-wrestling. My instinct was to stop it, but then I realized first, that they were mostly kidding around, and second, no one had to be careful because of low platelets anymore.

I was never so happy to see my boys fight.

Emily Cappo is a writer and blogger at Oh Boy Mom. (http://ohboymom.com) She is a regular contributor at Huffington Post and has also appeared in a Huff Post Live segment. She has recently completed a memoir, “Hope All Is Well” which chronicles mid-life loss, re-connection, and revelation.

Photo: canstock.com

Ava, This One’s For You

Posted on July 15, 2014 by CNF • Posted in Blog, Featured Blog Posts • Tagged brain stem tumors, cancer, Christopher's Haven, Emily Cappo, parenting, pediatric cancer • 2 Comments

By Emily Cappo

Moments after we arrived at our temporary apartment at Christopher’s Haven, a little girl with a blonde bob poked her head out of the door to see who was moving in. Seconds later, she bopped down the hall to meet us and seconds after that, she asked my son if he wanted to play with her in the communal playroom. Her mother immediately apologized for her assertiveness, explaining that they had been the only family living on the hallway for the past two weeks. Her daughter was starved for interaction with another kid.

Playing hard to get, my son declined and said, “maybe later.” He didn’t dare tell her that the real reason he didn’t want to play was because his uncle was already inside the apartment hooking up the used XBox machine that he managed to purchase at a bargain price. My son and I both knew that the XBox was going to be a key component to saving our sanity over the next six weeks living away from the usual comforts of home.

As we quickly discovered, the girl who lived next door to us on the hallway was named Ava [name changed to protect identity]. I knew Ava was there to receive proton radiation just like my son because that was why families stayed at Christopher’s Haven, an organization that provided housing to out-of-town families receiving this treatment at Massachusetts General Hospital. I didn’t know what her diagnosis was, but to me she looked healthy, strong, and completely un-phased by her illness. And she had more energy than five girls combined. I guessed she was about the same age as my son, around 8 or 9. I also assumed that she was in the early stages of treatment or perhaps she was wearing a wig or else maybe she did not have to endure as extensive a treatment regimen as my son.

I was wrong.

During our first few days of living there, we’d bump into Ava in the hallway or at treatment and she was always happy and ready to engage with whomever was around. A few days before her treatment ended, her younger sister arrived. Their sisterly bond was palpable and sweet as they went everywhere hand in hand.

One day, I bumped into Ava’s mom in the laundry room of the building. On our way up on the elevator, I asked her if the weeks they had been there seemed to go fast or slow. I knew their treatment was coming to an end, while ours had just begun. Instead of answering my question, she replied a bit cryptically with, “well, we’re not having a good day today.” Ava’s mom looked tired and emotionally spent. I did not press any further, and wished her a good afternoon.

I was somewhat surprised by her reply, because I had seen Ava earlier and she was her usual bouncy self, bounding up and down the hallway with her sister. I couldn’t or maybe I didn’t want to understand why they had a bad day.

In the waiting room at the treatment center the next day, Ava’s father sat down to chat with me. Usually, families didn’t discuss specifics of their child’s illness. But Ava’s dad was different. He point blank asked me about my son’s situation. I felt awkward, but thought it would be rude if I didn’t ask in return about Ava’s illness.

“Brain stem,” he murmured.

I nodded, as if I knew what he was talking about. He told me she wasn’t able to have surgery and that she had been initially diagnosed when she was three.

I couldn’t believe that spunky Ava had been battling with this for at least five years.

When I got home later, I decided to Google “brain stem tumors” and I did not like what I read. Suddenly, I understood why Ava’s mother said they were having a bad day. And then I realized that although we were all living on the same floor for similar reasons, each child’s situation could be vastly different.

On Ava’s second to last day, she and her sister knocked on our apartment door. She asked if my son was home and if he wanted a rubber ball that lit up when you bounced it. The two girls were holding a box of balls and handing them out to kids on the hall.

“Sure, I bet he would,” I answered.

I invited the two girls in so they could hand the ball directly to my son. He thanked them, thought it was cool, bounced it a few times, and then went back to playing XBox.

I had this urge to hug Ava good-bye, but I restrained myself. I thanked the two girls for visiting and watched them skip out the door in their jeans and matching cowboy boots. We never saw Ava again because they left for their home in Minnesota while we were at our hospital appointment the next day.

However, I know I’ll always remember Ava, because she was more than a little girl with a fighting spirit.

Ava was hope.

And perhaps that’s why even though I barely knew Ava, I felt an attachment to her as if she was a niece or a cousin. People always say the same thing when referring to children who fight serious illnesses: “Kids are resilient.” I completely agree.

And kids like Ava? Ava is exceptional.

Photo credit: istockphoto.com

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