Lessons During a Cancer Journey: Chasing Rainbows

A few months ago, I was asked to write a eulogy for a friend’s son. When asked, there was not a moment of hesitation. After all the Swenson family has been through, I’d never decline such an honor. Then I sat down to write, and was left speechless. After two years of knowing such a beautiful and generous family, I hadn’t the words to express my deepest sympathies. A funeral is a sad event. A child’s funeral is simply wrong. What could I say when nothing can ever undo the loss of their loved one? And more so, how could I say anything to change the heartbreaking truth of a grieving family.

When people often speak about the great person, the dearly departed, they mention the long and fulfilling life that they led and all the accomplishes that were had. Families hear messages of love and remorse from friends and family as they try to comfort and provide any bit of anything that may ease the pain felt by those left behind.

As the family struggles to adjust to life without Joe, I hope they will find comfort in knowing that though his time here with us with short, he touched countless lives. At birth, Joe was affectionately nicknamed “Buddha.” It wasn’t because he was a chubby baby, but because he came with a quiet sense of calm. As he grew up, Joe had this wisdom that belied his years. Despite his tribulations, he went along with anything, loved everyone and smiled often.

I met Joe through my boyfriend Cadance, who worked with Ronald McDonald House and the Leukemia and Lymphoma Society. Joe he had just been diagnosed for the third time when he first met Cadance. Although happy and bubbly by sight, Ewing sarcoma was waging war inside his little body.

For his siblings, his passing was undoubtedly the hardest. His big brother Kason lost his best friend. And with his sister, Emma being so young, she lost the ability to personally know just how special her big brother was.

When he was four, Joe was playing soccer with Kason when the ball hit him in the leg. He fell to the ground in tears. His mother picked up her son and comforted him. She held him through the night with no relief. The next day they took him to Denver Children’s Hospital where, three long days later, they discovered he had cancer.

With a simple six letter word, a family’s world was shattered. Joe’s parents, Marissa and Mitch, searched endlessly for answers, doing all they could to learn every piece of knowledge that could in any way help their son. Joe began treatment later that month with remarkable success. It had been nearly two years to the day of original diagnosis that I met Joe. He melted my heart and brought so much joy to my life.

Late on Jan. 22, I got a call from Marissa saying that Joe needed another operation because of swelling in his brain. That marked the fifth brain surgery in the two years that I’d known him. The family learned that it was a tumor causing swelling that had grown deep into the tissue that it was considered inoperable. The choice was not really a choice at all, but a decision that was being made to save his life. My heart skipped a beat and I ran over to pediatrics to be with his two siblings and try to make it just a little bit easier for his mom while they awaited Mitch’s flight from Texas.

Hours passed, and Mitch’s sister took the kids home to get some rest. As badly as Kason had wanted to stay, Emma would not go home without him. I stayed and spoke to Joe’s parents as we all knew that our worst fear was happening before our very eyes. Marissa stroked his head and we spoke softly, as if we would disturb him. I left a few hours later and couldn’t stop crying. It was simply unjust that this child, who fought so hard, was losing his life.

At 2 a.m., my phone rang. It was Mitch’s sister telling me that they were on their way back to the hospital because Joe’s vitals were dropping and it wouldn’t be long. I sat silently in the dark, wanting nothing more than to give a family the proper chance to say goodbye. Fifteen minutes past and my phone rang again, this time with Mitch on the other end of the line. “Marissa and I would like you here to say goodbye.” I returned to pediatrics and joined them beside the bed, holding Emma in my arms.

Minutes seemed like hours as we all stayed, waiting. Joe didn’t make a sound. No deep breaths, no pumping of his chest, no soft whimpers coming from his lips. At 5:23 a.m., his machine went off and he slowly slipped away into the night. Just a simple moment and he was gone. Marissa ran out of the room and Mitch ran after her. Kason sat silently beside his aunt and I sat with Emma sleeping in my lap as tears silently fell from my eyes, heartbroken.

The messages of Joe's journey are many. Cherish those you love. Hug your children. Never leave words left unspoken. Don’t take anything for granted. Tomorrow is never promised, so live for today. Life is often harder than ever seems fair. It is easy to become angry and upset. We may not get a choice in what happens, but we do get to choose how we react.

We should all follow Joe, and instead of choosing what is easy, choose what is right. He is an inspiration to how we should all live life. Everybody has a choice to let things in life make you bitter of better…be better. In your journey, even when the path seems impossible to walk, walk on. Three months may have passed, but I know that his parents, siblings and many loved ones have not even had the chance to grasp what has happened. I haven’t had that chance either. Although a two-year battle, somewhere in our hearts, we always held out hope that he would win the war. I count myself lucky to have known such a wonderful little boy, no matter how short our friendship was. Joe was such a unique soul and I know that in his eight years, he made an immeasurable impact. As such, my promise to Joe is that I will never stop chasing my rainbow. And I hope that at the end of his rainbow, he has found his pot of gold.