This is the twenty-third 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.
A professor of mine once described survey courses as akin to wearing roller skates through a museum. I think of that analogy when trying to capture this month of treatment.
The latest scans showed continued tumor growth. Our team decided to abandon the protocol we were on and pursue new treatment. What that would be would take a few weeks to decide. When you are a Cancer Parent, a plan is a very important thing. So even though we knew the plan wasn’t working, it’s mere presence provided something to hang our hats on. Left without one was scary.
Sparing you all the anguish we endured (including another round of staging), in the end, the Tumor Board, an ominous sounding group that met every Thursday to discuss all kids on current treatment, recommended surgery followed by radiation. The initial radiation proposed was external beam, which would have occurred at Northwestern with the same radiation oncologist that had treated my Mom. Sometimes cancer feels incestuous. Radiation is scary stuff for the developing brain, but external beam radiation is terrifying. Ugh. The saving grace with Donna’s tumor was that it was close to the skull, meaning they could hit it with the beams not having to penetrate the brain tissue. The hope was that this would preserve more healthy tissue.
Towards the end of this month the whole family (including Grandma!) made a road trip to IU in Bloomington, Indiana, to consult with the proton beam radiation center. At the time, there were only five proton beam centers in the country, now there are nine, one of which is affiliated with Children’s Memorial and is local to Chicago. Of the five, one would not have us (suck it, Boston), and one was closed for upgrades (really MD Anderson, really?). Our docs chose Bloomington, which is a teaser for tomorrow’s post. This shot was taken at the hotel where we stayed. Donna felt very fancy staying at a hotel.
The surgery stakes were higher this time for Donna because of the way her tumor was growing, snaking up the rim of her skull, infiltrating her dura, and resting adjacent to the vein of L’abbe. Our neurosurgeon, the part-time surgeon/part-time SAHM (stay at home mom, for those not in mommy circles) I so adored and admired, was justifiably concerned with this plan. So much of what made Donna Donna was her brain. She was a bright, clever, extremely verbal kid. Crossing the vein of L’abbe would have jeopardized her speech and cognition.
There was a cost benefit analysis at play here: was it worth the probable risk of gravely injuring and debilitating our girl to attempt to surgically remove a tumor that we knew there was no surgical solution for? Despite surgery, the tumor would 100% return. Guaranteed. Again and again and again. We knew that. But no surgery meant certain death at this point. I watched our neurosurgeon agonize over this decision. I believe she loved Donna. I saw it in her eyes and heard it in her voice. Her conflict was clear: She did not wish to be the agent of taking the Donna-ness out of Donna.
Dr. Bowman was the first person to cut Donna’s hair at her initial surgery when this whole drama unfolded twenty-three months prior. She saved those locks in a tiny Ziplock bag and tied them with a pink ribbon. She cut a dressing shaped like a heart for Donna’s first incision. Months later, when Donna was getting her first haircut, as we were preparing to leave I turned around at the salon and saw our neurosurgeon there with her two girls. We were two moms taking our kids for haircuts. To see her as a mom, out on an errand with her girls, was powerful for me. It seemed a sign — that she was somehow passing the torch, ensuring that the next person to cut Donna’s hair was doing it properly. When I called my Dad to tell him about this odd but delightful coincidence, he wondered why on earth I was taking Donna to get her hair cut at the same place a neurosurgeon takes her daughters, “[Mary Tyler Dad] must be doing alright for himself.” I heart my Dad.
In the end, Donna did well with the surgery. No harm was done to the vein of L’abbe, leaving Donna as chatty and brilliant as before the surgery. Relief. Cutting our daughter’s skull open and resecting her tiny brain was becoming almost rote at this point. The docs were pleased with the bulk of tumor they removed, but were respectful of its proximity to vital speech and cognitive centers of the brain, so we knew some residual tumor remained.
It’s hard to remember a time when brain surgery on your daughter becomes run ‘o the mill.
In the midst of all of this, I was learning to be mom to two instead of one. We had ENORMOUS support from family. Without Grandma, Papa, Auntie and Uncle we would have crumbled. They took care of us so that we could take care of Donna and Mary Tyler Son. And did I mention they all live half way across the country? Pediatric cancer takes a village, folks, and ours was such a loving, supportive community. We were blessed and so very grateful.
Mary Tyler Son was a joy. He nursed beautifully, though slept fitfully. Because he aspirated every time he was put on his back to sleep, our pediatrician told us to let him sleep in his car seat. Odd, but it worked. And Donna? She was light and joy, too.
Her clever brain, though invaded, functioned in a way I marvel at still. One day, fully embracing her toddlerhood, I had had just about enough of her unresponsiveness to my requests, her dawdling, the typical frustrations of raising a toddler. I said to her, “You know, Donna, I’ve noticed a lot lately that you don’t always listen to me. I have to repeat myself and it’s frustrating.” Her response, quick as a whip, was, “You know, Mama, I want to go to the park every day and sometimes it rains.” Suck it up, Mom, I’m three, was the subtext. God, I love that girl.
This photo was taken on a crazy mild day of February, just days before the surgery. Donna’s oncologist suggested we come in that day and attempt to meet with the neurosurgeon who had some time free in the afternoon. This suggestion came on the heels of many, many hospital appointments. I knew the forecast was calling for a bright, warm, sunny day. I said no. “No, Stew, I don’t think so. I think we’re going to go to the park tomorrow.” Simple as that. And we did.
It was my first time out with two kids all alone. I was fretting about Mary Tyler Son sleeping in the wagon while Donna was basking in the sun. This day, this brilliant, warm February day with the promise of spring about it, Donna was all over the place. I couldn’t believe it. Who was this girl?, I thought, And where is my timid daughter? The world is a beautiful place. Even when your daughter has cancer.