Pediatric Cancer Is So Personal

“Anchoring others to our world may lessen the burden and heighten awareness.”

June watching a St. Jude’s commercial — photo by author

“Don’t forget! There is a St. Jude’s fundraiser on March 8th!” the barbell instructor announced at the end of class as people meandered about, putting their equipment away.

I looked around. Was it just me that heard that? No one else appeared affected.

“It’s going to be a doozy of class, guys,” the instructor continued.

I could feel the wet balls of anxiety scaling the pipes, ready to burst like water balloons when they reached my eyes.

I was in a class with forty strangers that I attend three times a week. I know the majority of faces. Usually, you’ll find me in the front row because I am the last to book my spot, which is largely determined by my living kids' latest flu or ear infection. For your information, the front row is the least desirable row. Still, I show up. I make do. I do the work. Some days, I am even grateful to be there.

The blaring music the instructor plays helps me to temporarily forget my worries. Between sets, the women in the back of the room voice their complaints about the workout which makes me smile, even laugh. The teacher, standing on the stage in front of us, loves what she does. In the scheme of my bereaved life, it’s a relatively easy spot to land, albeit, in the front row.

………………….

I don’t have personal ties to St. Jude. My daughter, June, who died of neuroblastoma when she was eighteen months old, was treated between our hometown hospital and Boston Children’s Hospital. Yet, pediatric cancer is so incredibly personal. Every child associated with St. Jude could be my child.

Each case of pediatric cancer is different, the cancer itself, the treatment options, if any, and most certainly, the outcome. However, inexplicably, I feel connected to each child, parent, family, and organization that has anythingto do with pediatric cancer.

Am I the only one?

There exists an invisible rope that extends from me to each person I’ve ever met affected by the disease. At the end of the rope is an anchor set in the earth beside the person. I don’t set it intentionally, it just happens, and it doesn’t discriminate. For example, it doesn’t matter what type of cancer their child has or had, what age the child is or was, or what socioeconomic or cultural background they come from.

When I think of all the ropes that span from me to others and the anchors set at my feet, I feel a little less alone on my personal and isolated island of pediatric cancer.

Like for example, the long rope that runs from me to the mom I was introduced to just months after June was diagnosed. The only time we ever met was in a parking lot of the pediatric oncologist's office on a drizzly November day. She had extra bottles of tube feeds which she loaded into the back of my car. June sat in the back seat. Her son in her backseat. He was in a similar place in treatment and had the same type of cancer as June. We were just two mothers trying to survive. Despite June dying and her son thriving, she has anchored me with her kindness, compassion, and in the grief she carried for June after she died.

The lines don’t stop being thrown when your child dies. Since June’s death, the bereaved friends I’ve made through the nonprofit organization Rett’s Roost are some of the closest bonds I’ve ever formed. They have helped me make a bit of sense of what happened to June and our family. They have demonstrated how to continue life after losing a child.

I am anchored to the moms in Canada who I’ve never met, yet I follow them on social media because of their great online community. They openly talkabout their kids' cancer, host fundraisers and podcasts, and raise awareness in their daily lives. They inspire me to do the same. They show me how to support other moms who are also suffering, despite their own hurt.

My friend, Jacqueline Dooley, who I met while writing about June on Medium is someone who has provided me with great comfort through her own beautiful writings about her daughter, Ana. The bond we have formed through our love of writing about our daughters, who are no longer with us, has accompanied me during the darkest times in my grief. It has provided me with the spark that I need to reignite hope, and to surface where there is light.

It doesn’t matter the circumstance or outcome of pediatric cancer, I am connected to everyone I’ve ever met throughout this frightful and enduring journey. Whether the anchor has been tossed from me to them or from them to me, it is equal in balance, the rope just taut enough, to keep us securely entwined.

………………….

One organization that I am invisibly anchored to is St. Jude. Although, recently, when that tie surfaces, it seems to always be in a public setting and can be a sneak attack on all of my senses. I once wrote about the experience I had with a St. Jude’s commercial, just months after June died, while sitting in the waiting room of a car dealership. People abruptly became scarce. A true metaphor of what life is like for a mother after losing her daughter to cancer.

………………….

No one in the barbell class knew I lost June, nor should they have. I said hello to the kind woman a few rows down who always smiles at me when I come in a few minutes late. I reassured the lady behind me that I wouldn’t let go of my ten pound weights that we aggressively swung into tricep extensions to the song, ‘We Found Love’ by Rihanna.

I’ve established some level of trust in this new environment which keeps me coming back, yet I’ve never shared that my daughter June had cancer or that she died. There’s never been a reason to because, although, I come to the gym and use the class to work through my grief, the two don’t obviously overlap. I’m not wearing a sign on my head that says, “My daughter died of cancer,” although sometimes it feels that way. The class is a safe escape from the reality that June died, and despite almost three years having passed, everyday, I still need that escape.

………………….

Then, St. Jude hit. A bomb was dropped. My worlds collided. I peered out from under my mat, to see what everyone else was doing. People still mulled around the weight rack. Huh, seems like it’s only me, I thought.

I was thrust back into unsteadiness, where I’d lost my footing. I’d been pushed into the deep end of grief. I was the only one there. Everyone else was in the shallow end or headed to the hot tub. People were making their way to the saunas while I quietly drowned in the deep end because I didn’t have a chance to unvelcro my leg weights. The sneak attack reminder of ‘this is my life’ caused the weight of losing June to take me away from my present surroundings and pulled me under.

………………….

When the flashbacks subsided, I found myself, sitting on my bench, pretending to look at my phone. I glanced at the mirror in front of me, my eyes were bloodshot. I noticed that the instructor had left and the room cleared out. Better that way. My cheeks were soaked with tears.

Pediatric cancer is so personal that when a stranger tosses a line, an anchor has the ability to pierce one’s heart before it falls to the ground.

The name ‘St. Jude’ triggered memories of the past. Like the time between stem cell transplants when June and I sat in the living room, and I fed her bits of cookie in her highchair. She wouldn’t eat at the time, but that day I was able to get her to eat a few Bunny Grahams. Her taste buds had been fried by the chemotherapy.

“Tastes like I’m sucking on metal,” one of my patients once shared with me who had recently undergone chemotherapy. June couldn’t specifically tell me how it affected her taste, though she told me in the absence of eating. Her waist told me by withering away as she regressed in clothing size. Her gaunt eyes reminded me, and the skin folds on her tiny frame that once harbored baby fat, did too.

I placed little cookies on the tray, lowering myself into a chair beside her. The television was on softly in the background to drown out the quiet. To make the space of the empty room feel a bit more filled and stop the deafening silence from suffocating me, as it often did.

A St. Jude’s commercial came on. We both froze. Then slowly, eyes fixed on the screen, June lifted a cookie to her mouth and chewed it, as she watched various faces of bald children, splayed across the screen, wave to her. Through the lens of June’s eyes, I watched the beautiful, sick children from behind June’s bald head. The children who appeared just like her. Goddamnit, I thought, I’d been forced to see that, yet again, this is our life.

I’m not sure why, but I took a series of photos of June watching the St. Jude’s commercial. Never once did she take her eyes off the screen. A little boy on the television ran into the arms of a nurse who handed him a string of balloons. June watched the kids, captivated, as I watched her, entranced and broken-hearted.

This is our life.

June — photo by author

A simple commercial, a simple name, exposes my truth. It’s not simple, however, it has the power to pull me from my present life back into the traumatic life I am forced to reconcile with, that is also mine. A reminder, although not meant to be intentionally harsh, can be brutal in an unpredictable situation like the gym.

The place I try to live is an intricate balance of grief and normalcy, whatever that means. The truth is, no one can possibly begin to understand, in a deserving capacity, the life of a bereaved mother or a mother whose child has pediatric cancer, until it is them positioned so vulnerably in the front row.

………………….

Several weeks of classes went by and another announcement was made. Before I could think much about it, I decided to throw an anchor.

“This is my daughter, June,” I said to the instructor after class, holding up a photo of June on my phone.

We embraced. We cried. It’s one of those things where, I didn’t plan to cry, but when I saw the tears forming in her eyes, I didn’t hold back.

“I had to share her with you because with the upcoming fundraiser — ” I stopped. I didn't know if she’d ever known a child who had cancer. Maybe June would be the first. Either way, maybe June would be filed somewhere in her mind.

I extended the rope.

“No one can ever truly ever understand,” she said. “Thank you for coming and doing the work. Thank you for sharing June with me.”

The anchor was set.

This is what raising awareness looks like for me. No one wants to be in the front row when it comes to this disease, yet we don’t have a choice. So instead of tapping out, we rise to the occasion, we do what we can. We do the work and suffer through it.

I cast my invisible rope into the world, hoping the anchor sets. For some the anchor will drag and won’t catch, and that’s okay, too. For other’s the anchor will be swallowed whole by the ground beside one’s feet. I consider that a win.

Pediatric cancer is so personal which is why it’s of utmost importance to continue sharing when you feel it is right. It might lessen the burden just enough for you to show up in your designated space, which if you’re like me, is in the front row.