This is the second of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
There is no simple, linear explanation for what happened during these weeks. After the mysterious fevers wore off, Donna seemed to blossom and become more of herself. Her cheeks pinked up, her hair, short until now, grew curls seemingly overnight. She was active, silly, engaged and engaging. I coined the term “brightful” to describe her lovely combination of clever smarts and playful joy.
With a few weeks to absorb the diagnosis and Donna returning to her shiny self, we settled into Threat Level Orange and were relieved to be rid of the red. Donna was afforded some time to recover from the surgery and started into pediatric rehab three mornings weekly at the Rehabilitation Institute of Chicago. She loved her mornings there — it was like an indoor playground. And quickly, she regained those physical skills she had lost, though stairs, running and jumping were still very difficult for her. The structure of the schedule was also a blessing to us after the free for all of the past month.
The first post-surgery MRI date came and, teeth gritted, we went back to Children’s Memorial and watched our girl be put to sleep so that we could get a glimpse of what was happening inside her tiny, beautiful head. We worried, though there was a sense that this first MRI was not to be feared as it seemed impossible that the beast would return so soon. Home again in the afternoon with a drunk, post-sedation Donna requiring lots of care and attention, we got the call from the nurse coordinator that while not official, the scans looked clean. Hooray! A second call that evening confirmed that radiology also deemed the scan clean. Double Hooray! It felt like the piano above our heads was moved a little higher.
Two days later, at the clinic for a follow-up visit, we learned that the original report was wrong. There was a “nub” at the tumor site that did not look like scar tissue. Donna’s neurosurgeon was who caught it, and with closer inspection, all others now agreed that Donna had relapsed.
This news sent us into weeks of uncertainty. No one could agree about how to proceed. Add to that, Johns Hopkins now questioned the original diagnosis. Our oncologist didn’t want to use chemotherapy, our surgeon didn’t want to operate, our radiologist couldn’t decide which type of radiation would be best.
Instinctively, we joined Donna in her blissful, toddler state of being. We went to the zoo. We treated Donna to her first ice cream. (She didn’t like it). We bought a video camera and started shooting. We did what we needed to do to fill our days, Donna’s days, until we got her to sleep and we had some time to think and breathe and feel the fear that we kept at bay when Donna was with us. And just when we thought we couldn’t take another moment of the hell that fear is, there was Donna, right in front of us, demanding us to be silly, to sing and to dance and to play. How could we not? So we did. We played and worried. Sang and fretted. Snuggled and tried not to drown in the doom.
As days passed, a plan was cobbled together: Donna would travel to Houston to receive proton beam radiation treatment at MD Anderson in Texas. Hours were spent on the phone ensuring that Donna’s treatment would be covered by our insurance. My social work advocacy skills were a welcome tool for these tasks.
Mary Tyler Dad wrote in our caringbridge journal during this month, “Medicine, fear, and love. That’s what we have right now, and enough of the third is helping us struggle through the first and the second.” Amen.