Reflections from the hidden world of childhood cancer

March 9, 2018

The past seven months have given me plenty of time and space to contemplate. One lesson from last year stands out, and serves as an umbrella for many other lessons. The fact is, we never truly know what others are going through. It takes effort and selflessness to put ourselves in other people’s shoes. I spent half of last year, and continue to be, immersed in a hidden world where you will see deep pain in more than one person’s face and feel an accompanying fear every single day. And in the next step, on the next face, you’ll see joy and feel a hope so true that you’ll question whether you’ve ever known either.

One day at the end of last year, when we came to the clinic, we were sitting in the crowded infusion bay waiting for Patrick’s intravenous fluids to be administered. To the right of us was a couple with a toddler. They were obviously newly diagnosed. The whole clinic knew this by the terror in the toddler’s cries as the nurse drew blood for lab work, by the helpless look on his dad’s face and by the tears in his mother’s eyes as she tried to comfort, and at the same time, restrain him. And to then confirm their initiation into this reality, a child advocate went through the standard new patient orientation with them. To the left of us was an excited boy around 8 years old alongside his entourage of supporters dressed in matching T-shirts. They were beaming as they chatted, keeping one eye on that boy as if they might miss something in the blink of an eye. He was there to ring the bell, a ritual that signifies the completion of cancer treatment.

To our right, pain and fear, and to our left, joy and hope. Being in the middle of that was almost too much to bear, but yet was a reflection of our internal experience thus far. It felt familiar but profound as it played out in front of us. The common denominator in a pediatric oncology clinic is cancer. That’s the obvious struggle. But I often wonder what other challenges are stacked on top of this epic struggle for the families in this hidden world.

Being in the same struggle so intimately with strangers compels you to not only let them off the hook when they are grumpy, but to also offer a kind word or a smile. This shared struggle compels us to not only give them the benefit of the doubt when they rush out of the family lounge without throwing their trash away, but to throw it away for them, too. I can put myself in their shoes because I am in those same shoes.

On May 22, 2017, our only child had a biopsy of his left knee at a children’s hospital near our home in Las Cruces, New Mexico. On that day, Patrick’s sixteenth birthday, we learned he had a cancerous tumor. Just four days earlier, we thought his ongoing pain and swelling was a flare-up from a skateboard fall from the previous year. Our world came to a screeching halt.

My husband immediately started researching our options, and we learned Texas Children’s Hospital was one of the best institutions in the country for childhood cancer care. Within one month, we were in Houston for a consultation. Dr. Mahajan, our oncologist, had already won us over with several compassionate and helpful calls she made to us while we waited back home for the first opinion and ironed out details for our trip to Houston.

On June 21, 2017, a week after our consultation with Dr. Mahajan and our surgeon, Dr. Marco, and following a slew of tests including a second biopsy, we learned Patrick had osteosarcoma, a bone cancer. One of the reasons we chose Texas Children’s was for their expertise in healing not only the body, but also driving care and attention to the mind and spirit. Intuitively, we knew the trauma of cancer didn’t come in a small package with clean margins. There are layers you can’t see, and detours you won’t expect. We were bound and determined to not let this uphill battle get the better of Patrick or our family.

Elsa, the therapy dog, and her human companion, Sarah, have brought comfort, smiles and laughs to our family during the worst parts of Patrick’s treatment. With the help of Dr. Washington, a Texas Children’s psychologist, Patrick has learned to let go of expectations, a crucial skill to have in times like these. Arlene, our social worker, connected us with organizations that offer free temporary housing, leading us to a comfortable home away from home in Houston.

Patrick’s chemotherapy treatments are inpatient stays that last from three to five days. We’ve had the most confident, competent and caring nurses, patient care assistants, physician assistants and oncologists. You come to value those three C’s when your child’s life is in other people’s hands.

Patrick is healing beautifully from the surgery that gave him a titanium femur and a full knee replacement. He is starting to walk without the help of crutches, and is completing his last chemotherapy session this weekend. Soon, we will no longer be immersed in this hidden world of cancer, where fear, pain, joy and hope are all palpable in a way I’ve never experienced before. How do I remember this for the rest of my life? Or maybe the question is, how could I ever forget? I’m grateful for these lenses of compassion, regardless of how I acquired them, and I pray our hearts stay wide open this year and for always.

Post by:

Deidra Schaub, mother of patient