This is the seventeenth 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’ve used the word whiplash to describe life with Donna’s cancer before, but this month was an exercise in it. We went from feeling damned to blessed within just a few days. After confirmation that the cancer had not metasticized, Donna had her third major tumor resection on a Friday morning. By 11am on Sunday, after a breakfast of McDonald’s french fries and a walk around the unit, she was discharged. A friend of ours joked he had hangovers that were worse. And it is crazy and backwards to feel intense pride about your girl’s ability to handle a craniotomy, but damn, we were proud of Donna. The sailor suit photo was taken just eight days after surgery.
This surgery also involved a dose of internal radiation, called IntraBeam, that is only performed at Children’s Memorial in Chicago. A different type of GPS style MRI scan was used to help the surgeon locate the size and scope of the tumor. The stickers you see on Donna’s head were magnetic and used to create a 3D image of her brain to guide the neurosurgeons. Did I ever mention that Donna’s neurosurgeon works part-time? Yep. Part-time neurosurgeon and part-time at home with her kids. That gal is a rockstar in my book.
During the seven hour surgery, after removal of the tumor and some surrounding tissue, a radiation oncologist and nuculear physicist were brought in to the OR to administer the dose of radiation directly to the tumor site within the brain, a process we hoped would “cook” the beast. The idea of radiation was frightening to us, but all involved believed that while experimental, it could help Donna. I wrote at the time, “Watching your child undergo majoy surgery is like labor. You forget how bad it was the last time around in order to do it again, as needed.”
The weeks leading up to this surgery were so difficult, full of fear and worry. Then, after the typical (scary that brain surgery on your three year old daughter can be described as typical) post-surgical discomfort and crankiness wore off, our girl was just as she had been. Amazing, albeit with a new “cheetah” haircut, needed for the GPS MRI and hockey stick scar that looked mean and angry. Donna came home and within minutes started walking and playing, eating and climbing. Mary Tyler Dad and I were shell shocked. Whiplash.
After the first surgery, there was the terror and fear of the unknown, and after the second surgery Donna was flung into chemo. After this surgery, Mary Tyler Dad returned to work three days later and I was at home with smiling, brightful Donna trying to figure out what in the hell had just happened. Mary Tyler Dad captured the moment with this, “She’s doing well enough that I keep waiting for the other shoe to drop. And then I say to myself, another shoe? Wasn’t a brain tumor relapse enough shoe for now? Maybe this was the other shoe, and its dropped already.” Always working to choose hope.
So life went on. And Donna took our hands and guided us to it. At certain points, and I’m not joking, we wondered if the radiation had done something to Donna’s brain that was unintended. Within days of turning three she had her surgery and within days of the surgery, she morphed, right before our weary eyes, into a toddler. Tantrums, time-outs, testing — the whole kit and kaboodle. It was exhausting and utterly life affirming. Mary Tyler Dad wrote:
“If your daughter has survived (so far) a year and a half of surgeries, “sledgehammer” chemotherapy, hospitalizations, nausea, constipation, fevers, and misery, will you be properly grateful for every minute you get with her? And the answer is ALMOST, which seems pretty ungrateful and miserly, but there it is. I dearly love this girl. I fret that the treatment has hurt her, and I fret that it didn’t do enough. I think of the friends we have whose time ran out, and I try to appreciate every tantrum as a chance to soothe my living, breathing little girl.”
And, that, my friends, is why I married Mary Tyler Dad. I told each of my kids on the day they were born, “You won the Daddy Lottery! Congratulations!” And they did. And I won the Husband Lottery.
Speaking of kids, as in plural, I started to show this month. Donna was intrigued and curious about my growing belly. We spoke often of having a brother or sister coming to join us in the coming months. She was thrilled. And empathic. So empathic, in fact, that miracle of miracles, she told us she, too, would be having a baby! Donna had conjured up her own pregnancy and was turning into a good little mother. She worried about the heat of warm baths, “Will it hurt my baby?” She shushed us if we were being too noisy, “You’ll wake the baby! It needs to rest.” She had even selected a name for her soon to be bundle, Hot Air Balloon. How can you not love this girl?