On Quiet Dogs and Cooking Shows: A Child Coping with a Brain Tumor
“Is it true that Buford provided you with ‘steady, quiet companionship’ when you were going through treatment?” I ask my nine-year-old son. He is my “fact-check” when I am writing about his months of treatment for a high-risk, malignant brain tumor during his seventh year. Torin rarely complained about the many hardships he endured. Instead, they were mirrored in the lives of his stuffed animals such as Buford.
Torin considers my question. At first he nods, but then says pensively, “Well, he wasn’t silent, but he did speak quietly.”
Torin received six weeks of radiation followed by four cycles of high-dose chemotherapy with stem cell rescue. Radiation is difficult, but generally chemotherapy is harder to tolerate in the short-term. Unfortunately, every step of treatment turned out to be harder on Torin than what we were told was “typical” and he suffered significant side effects from the beginning.
Within three weeks of beginning radiation, he no longer had the stamina to attend school. He developed mucositis, which is a condition where the lining of the gastrointestinal tract becomes inflamed or ulcerated. In Torin’s case, the pain was mainly in his throat and stomach. Eating was very difficult and he began to lose weight. Talking was painful, so he chose his words carefully and sometimes went days only nodding and pointing in order to indicate his needs. He began to sleep more and more and eventually was only awake for several hours at a time. This was radiation somnolence syndrome. At its worst, he slept about seventeen hours of each twenty-four hour period.
Torin was hospitalized several times as a result of radiation. He needed IV medications when the pain was extreme and IV antibiotics to ward off infections. When his weight dropped too low, we learned the ins and outs of his new nasal gastric feeding tube during an inpatient stay. In his life before cancer, Torin was rarely sick. His days were filled with school, friends, Kung Fu, and time with his ten-year-old brother and me. In a matter of weeks it was reduced to sleeping and quiet activities at home or in the hospital and travel to and from radiation treatments.
On the days Torin couldn’t stand the pain of swallowing, he sometimes replaced meals with cooking shows. The Barefoot Contessa was a favorite. He would watch her prepare pear endive salad or tapenade, and breathe, “That looks so good…” although in actuality, he never would have eaten either dish. I think he enjoyed watching her calm assurance as she piled a serving platter with crusty baguette and spooned antipasto into a bowl that sat within easy reach .
His big old stuffed Rottweiler watched from his place next to Torin’s head. Buford was a gift from our friend Russell on the day Torin turned two. Dogs age faster than humans and before Torin became ill, it was not uncommon for Buford to celebrate three or four birthdays in the space of a few weeks. Torin would tear up bits of paper, bright yellow, green and blue, and heap them into a bowl to be presented to Buford as a feast on his special day. As Torin went from healthy to sick, Buford provided him with companionship without ever demanding that Torin keep up his side of the conversation.
One evening in the hospital, I turned off my laptop and began to get ready to sleep on the fold-out couch. Movement from Torin’s bed brought me to his side with my toothbrush still in hand. His face portrayed misery and I felt a jolt of fear. We did not need another crisis with Torin’s physical state. My hand went to his forehead as I asked what was wrong.
“Buford just told me the story of how his family died.”
“What happened? How did they die?” I asked, feeling some guilt at my relief.
“Every one of them died in a fire. Buford was the only one who escaped. He was alone until Russell found him and took care of him for awhile and then gave him to me to take care of.” It was evident from the look of horror on Torin’s face that he could imagine every detail of the tragic day Buford became an orphan.
I asked if he thought it might help for me to type the story for him and he nodded. I opened a word processing document. He spent some time figuring out how he wanted the title to look. When he tried to give me the details again, he couldn’t do it. Instead, he hugged Buford hard. His eyes grew moist. Distressing as this conversation was, I suspected it was positive for Torin to find a way to give form and voice to the losses and grief he was experiencing.
“Maybe you’re feeling too sad to write it now.” He agreed. I wanted to speak to the part of him that was expressing this anguish. “Buford will be okay. We are all going through a lot of sadness right now, but everyone in our family is going to be fine. I’m going to take really good care of you and you are going to take really good care of Buford.” He nodded and stared at the ceiling, still gripping Buford tightly. “Do you want to see if a cooking show is on?”
“No.” He paused and then said, “12 belongs to 36.”
I nodded. “It does. What part of 36 is 12?”
“A third. Now I would like to watch a cooking show.”
About a week later, Torin and I arrived at his radiation appointment. He was home from the hospital, but still dealing with extreme fatigue, pain and nausea. To be out of bed and upright required enormous effort. The nurse practitioner who supervised Torin’s care in the radiation clinic came into the waiting room carrying a huge plastic tub filled with small stuffed animals.
“I know you have been having a really hard time, Torin. I want you to pick one.”
There was a black-eyed raccoon, with soft gray fur that I thought he might choose, but when she pulled a little Rottweiler puppy from the bottom of the bin, Torin gasped. It was a miniature version of Buford. He reached for the puppy and hugged it.
After his radiation session, I was helping Torin get dressed and he lifted his gaze to meet mine. “The puppy told me he is Buford’s long lost baby brother.”
“Wow, Buford will be so happy. Was the puppy in the fire too?”
“No, because he has been lost.”
“What is Buford going to think when he sees him?”
“He will be overjoyed. He didn’t even know he had this brother.” Torin held the little dog against his chest. I smoothed the wisps of hair that had somehow managed to survive to this point in treatment. It was almost always Torin who gave me what I needed to get through those months. I silently thanked this small boy for reminding us both that we can endure almost anything if we are not alone.