This is the twenty-first 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.
I was eight months pregnant during this month, still working, and that was tough, cause, man, fretting can be a full-time gig. Mary Tyler Dad and I were bone tired. The grind of daily life coupled with the impending addition of a newborn on top of the gnawing, tenacious worry and fear and doom attached to the uncertainty of Donna’s cancer was threatening to disable us. Donna was simply Donna. When family visited from out of town we would anxiously await their assessment of her. To us, she seemed stronger, more vibrant, more physical and not remotely like there was a tumor snaking up the inside of her skull.
The holidays were approaching. After last year’s stem cell isolation over Christmas, we were working hard to make the season special for Donna. When I asked her what she wanted Santa to bring her, Donna would say, “I only want you for Christmas, Mama. And candy canes!” Donna was pretty clear about how she felt about Santa: “I hate him.” Wow. To hear that coming from such a gentle girl was both funny and alarming. Donna gave strict instructions that Santa was not to come into our home to deliver gifts. They were to be left on the deck where her Dad and I could retrieve them. One night, before bed, Donna asked for a story about day hospital, where she received her bi-weekly chemo. I started in and she quickly interrupted and said, “Dr. Stew is not scary. Santa Claus is scary, but not Dr. Stew.” Oh, my girl. My girl, my girl.
Each afternoon when I picked her up from the sitter we would drive around a bit and look at decorations. She loved the inflatable snow men and reindeer. She loved the festiveness. She worried that the trees were cold and lonely without their leaves and thought that all of them should have lights to keep them company until their leaves grew back. Her empathy at three still takes my breath away.
I was a bit of a wreck in these weeks. So close to delivering, I felt uncomfortable and frantic that our Donna-Mama time was coming to a close. I was conflicted about bringing a baby into the chaos of our lives. Full disclosure: I was scared out of my wits. I was scared for Donna, I was scared about managing two kids, I was overwhelmed. Just managing cancer was a lot, how, on God’s green earth, would we do this cancer thing with a newborn in tow? Throughout her treatment Donna had two parents giving her everything we had. With a newborn, that would change. We would be caring for two kids, not just one.
Possibly sensing this, our team at Children’s threw us a bone. No scans this month. Donna would proceed with a couple more rounds of the Avastin and Irinotecan with scans just before Christmas. The plan would be reevaluated when the results were back. A reprieve from bad news was welcome.
Early in the month we were guests at a holiday party at O’Hare Airport sponsored by United Airlines for children with life threatening illness, a “trip to the North Pole.” One of the Child Life therapists offered us the invitation in early November. When she suggested it I gladly accepted, but when I saw the invitation, my heart sank. ” . . . for children with life threatenng illnesses.” I put it on my bill pile and it sat. I actively ignored that invitation until the very last day that I could. I did not see Donna in that way and did not want to see Donna in that way. The girl I woke up with and bathed and fed and read to could not possibly have a life threatening illness. And yet, she did. That was the rub. Bastard cancer.
The day of the party there was a bit of a buzz. Donna wore her prettiest black velvet dress with metallic red mary janes. She even let me put a plaid bow in her hair. That made me disproportionately happy. We arrived at O’Hare, were ushered through security by United volunteers wearing red noses and reindeer antlers, and were guided to a party at the gate. Then, with tickets in hand, we got on a plane, taxied around the airport (before 9/11, they actually used to fly around for a while), and “landed” at another gate where we deplaned for lunch and a visit with Santa.
As the folks from the full plane exited the tunnel to the gate, there were two rows at either side of Chicago fire fighters and police officers giving these kids standing ovations. I lost it — tears, sniffles, undisguised emotion. Something about these men and women who put their lives on the line daily saluting these kids whose lives were currently on the line really moved me. To this day, I well up when I see a fire fighter in full gear. For so many kids, officers and fire fighters are their heroes, and here they were, in full uniform, saluting and honoring these children. I am crying when I type this, just remembering.
Donna had a love/hate relationship with this party. She was a girl who loved her parties and wearing “party shoes.” The staff of United and volunteers treated us like visiting dignitaries all day. We got to visit the “Elves’ Station,” where Donna was presented with a cart loaded to capacity with gifts for her – – it was obscene, really, the amount of swag gifted her. But something in Donna’s temperment or something that had changed in her chemistry from the tumor or chemo contributed to bouts of skitishness that were difficult for her and us. She was terrified of Santa. She was traumatized by the roaming Ronald McDonald who somehow could not get the message to leave Donna alone. The amount of people there was too much for Donna. She wanted to go home.
I chose this last picture because I think it is a perfect analogy for Childhood Cancer Awareness Month. You have to look to find us – – there we are on the right with the previously mentioned swag. The airport is busy and bustling around us. No one is looking at the girl with cancer. No one knows Donna has cancer, yet there she is, right there in the midst of everybody else. Our lives are busy, frantic, scheduled. We need to get from Point A to Point B fast. Who looks around and notices all that is going on right in front of them?
Look at this picture and see Donna and know that all around you, even when you don’t know it, there are children with cancer. Some will live, some will die, many will be affected by the toxicity of their treatment for the rest of their lives. They’re right there every day even when you don’t see them. Donna’s hospital was often filled to capacity. Every day those beds are filled with children newly diagnosed, in the midst of treatment, celebrating the end of treatment, or dying. Every day.
Mary Tyler Mom 