What You Don't See Changes Everything

Grief and Illness on the Inside

Trigger Warning: Childhood Cancer (when you get to a green heart, take a moment to breathe. If you can, send love to a family impacted by cancer.)

Thank you for joining me in The Pause Place. Holding space for you in grief, feelings of loss, and your journey toward hope.

September is Childhood Cancer Awareness Month.

Photo by Essencestock on Canva

Cancer changes everyone. 

Sometimes only the person who has cancer knows it. 

My son, Nick, was diagnosed with cancer during the summer.

Fellow classmates didn't know or see the changes Nick experienced from the first dose of chemotherapy. The drugs that were destroying his leukemia were also killing off good cells, damaging his organs, and infiltrating his blood. 

They didn’t see the rashes that first exposed the cancer or the reaction from the chemo.

Receding gums, loss of hair, infected port. These changes were slow and often hidden so that someone who wasn't aware of our story would never know that Nick was ill.

We didn't always see the fatigue hidden behind his optimism that he would be able to go back to his swim team and start 8th grade. Nick had applied and been selected to be part of the technology program. This was the first step in his dream of becoming a high school tech teacher.

Before his diagnosis, Nick had started lifeguard training. He’d been on a swim team for a number of years. This was his other love. On a hot August day, Nick showed up at his swim practice. He felt good and wanted to be with this team. 

Nick looked great. 

He still had his hair. Yes, he had a port but it was covered in Tegaderm™ that matched his skin tone. Yes, he appeared thinner but he was a built young man. As the swimmers raced, they called to Nick:

“Come on in, Nick.”

“Swim with us!”

“We missed you!”

I wanted to stop my boy and remind him to take it easy. But the allure of being a normal kid competing on his swim team, becoming a lifeguard, or having his first girlfriend proved too strong.

Nick jumped in the water and took off. He swam as if his life depended on it. He swam as if that chemotherapy hadn't destroyed his body.

He made it one lap.

Then my beautiful boy got out of the pool and vomited.

What his teammates didn't see was that Nick wasn't healthy on the inside. Of course he was the same vibrant, charismatic person he had always been. And he was trying so damn hard to keep the parts of himself the cancer greedily ate away.

Nick never swam again.

Sadly, he became self-conscious of the body that wasn't what it used to be.

Determined to fulfill his dreams, Nick went to the third day of school. He received special permission to wear a hat as his curly locks were falling out and his hair had been cut short.

Nick (left), Stephen (right) First day of school picture 2008 (photo by author)

His schoolmates called to him: 

“Where have you been, Nick?” 

“What's going on?”

They didn't see his struggle or the determination and tenacity it took for him to be there. They didn't understand why he didn't attend gym. He looked healthy. 

Why didn't he have to run laps?

Why did he get to wear a hat?

Nick only made a few days of school. He had to drop out of his technology program.

No one saw his heartache.

No one saw his fear.

I did when I tucked him into bed. A 12-year-old boy holding his childhood Tigger. Realization hitting him that he might not ever be the same. That he might not make it.

Nick passed away that October.

If I see someone wearing a mask, sitting out when kids play, wearing a cap on a really hot day, or simply sitting in stillness feeling the heat of the sun on their face; 

I don't judge. 

I don't mock. 

I don't scorn.

Whether they are sad because of a loss or struggling with an illness. 

What we assume we know; probably is wrong.

I send them love bubbles filled with healing and peace.

I’m sending you one right now.

I'm sending love to all the children who are currently battling cancer. 

Globally, approximately 400,000 children are diagnosed with cancer each year.

I'm sending peace and comfort to all the families who have lost a child to cancer.

You can't see what's happening inside a person physically or emotionally. What you do has the potential to change everything.

You CAN ALWAYS act from a place of love, kindness, acceptance and grace. 

Nick, one day after diagnosis (photo by author)

Here are some foundations that support childhood cancer research.

• https://www.stbaldricks.org/

• https://www.alexslemonade.org/

• https://curesearch.org/

A few foundations local to me in the Albany, NY, USA region:

• http://www.maddiesmark.org/

• https://www.starlight.org/

• https://www.albanymed.org/

There are many foundations that you can support. To directly support childhood cancer research and services, make sure the majority of their donations are for children. 

Let’s Connect: Always happy to hear from you. Feel free to share stories or how this resonates. All thoughts are welcome.