This is the twenty-seventh 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 cancer treatment.
(All photos courtesy of Joel Wanek at Joel Wanek Photography.)
In her last week of treatment, a lump was detected in Donna's neck by the staff at the proton beam radiation center. At the end of her morning treatment, I was called back to the recovery room, just as I was every day. Greeting me, standing over a still sedated Donna, was one of the medical directors. Oh, no, I thought, what is this? There was no suspense involved, "I see a lump in her neck and it is suspicious for tumor," he said. Just like that. The pit that exists in every Cancer Parent's gut grew from a pea to a watermelon for me within moments. I had seen the lump in question in passing the night before. Donna was in our room with her playmate and I was walking out into the hall when I turned around to say goodbye and saw it. A fear flashed in me, but Donna's neck turned and it was gone.
Except it wasn't gone. It was there and it was suspicious for tumor. I knew it. I felt it. It seemed impossible, as we had had clean scans just fifteen days prior, but cancer knows no boundaries. It does what it wants when it wants. True fact. The suggestion was made to head over to the local hospital for an MRI. One of Donna's sedating doctors who had treated her previously was there and had generously agreed to stick around and sedate her for the scan. We could take her right away. A dual sedation is never recommended by medical professionals (that's why Donna had her picc line inserted without it), but in dire cases, you do what needs doing. Clearly, this was a dire case.
I called Mary Tyler Dad at home in Chicago and caught him on his way out the door. He drove directly to Bloomington to meet us at the hospital. He made record time. I felt terror. If you have not felt terror, you don't ever want to, and if you have felt it, you know precisely what I mean. Images seem to work better than words, so you can think of it as a swirling, growing, angry hurricane of hell in the middle of your gut. You are powerless.
Thankfully, Auntie was with us and came to the hospital. I don't remember getting there. I do remember registering. Sitting with my family in a waiting room, such a benign, innocuous space. I don't remember my children there. I remember my sister and her knitting bag resting on a chair. I remember bringing Donna into the MRI room, but not dressing her in a gown or her being re-sedated. I remember the kind face of the doctor who had sedated Donna numerous times at MPRI. I remember sitting in the cafeteria with a turkey sandwich in front of me, but not how I got there or how it got there. I remember Mary Tyler Son wailing, and me not being able to hold or comfort him. I remember Mary Tyler Dad finding me and holding me. I remember splitting the sandwich and it tasting like lead fabric.
The scans were complete and we all joined Donna in the recovery room. She was hungry and ate french toast sticks and syrup. We were both sticky as she was sitting on my lap. We were discharged and a friendly nurse wheeled me and Donna out the door to the car. "Hospital policy," she cheerfully remarked. In the car on the ride home, we heard from Donna's doctor in Bloomington that the lymph node was not attached to the tumor. It could be cancerous, but it was not the tumor we had been treating. That brought comfort. The plan was to finish out the week and follow-up with our team at Children's in Chicago. This put a pall on our last week of treatment and our remaining time at Jill's House. Of course it did. For Donna's sake, we worked hard to focus on what she had accomplished. 53 proton beam radiation treatments spread out over twelve weeks. We had lapped every other guest at Jill's House. All our neighbors had moved on and back home.
Donna's going away party was lovely. Our closest friends, the manager and her children that lived onsite, were there and kept us from jumping off a cliff. There was pizza and decorations and a dance party. Oh yes, a dance party. I have such a beautiful sense of that last evening, spent in the company of dozens of people affected by cancer. Some young, some old. We all danced together. We put bean bags on our heads and pretended to be sleeping fish. All of us. You have not fully lived until you have danced with young and old alike.
We got home late on a Tuesday night. On Wednesday morning we headed to Children's to meet with Donna's oncologist. Within minutes it was clear that there was concern. It was confirmed by the look in Dr. Stew's eyes. He is an outstanding human being, that man, but he does not have a poker face. We met with a surgeon and had a CT scan of Donna's lungs. In hospital time, those things take days or weeks to schedule. Unless your daughter is dying. Then it is mere minutes. After the scans, we were sent home to await the results. I dropped Mary Tyler Dad at home with the kids and went alone to the grocery store. We weren't even home long enough to get milk and bread before the call came. Donna's lungs were covered with lesions, her lymph nodes were full of cancer.
I got the call driving down Touhy Avenue, the milk and bread in the trunk. I had to pull over. It was Mary Tyler Dad who called me. I called Dr. Stew immediately. There was nothing to be done. The forecast called for a good summer, possibly fall, but Donna would die. It was the first week of June.
The plan was to put Donna on an oral chemo that could eke out several more months, we hoped. She was completely asymptomatic, so preserving time was the goal. If the oral chemo was easy enough for Donna to tolerate and had the chance of extending her life by weeks to months, we decided it was worth it. No more hospital stays. No more scans. The cancer would run its course, but with Donna living so vitally, we wanted to prolong that as long as possible. Dear Donna. My daughter was dying of cancer and to look at her was a total disconnect. Dr. Stew had said once of her, "She may have a brain tumor, but she is not a sick child." He nailed it with that statement. Donna had lived with cancer since she was twenty months old, but it never prevented her from growing, learning, developing, being a child. That was one of our blessings.
I wrote at the time:
Today, right now, she is not suffering. She is chatty, hungry, silly, thoughtful, playing catch and riding her tricycle. Two years ago this week, when it was first learned that Donna's cancer might have spread to her lungs, we had a prognosis of 2-3 months. If someone had said on that day that Donna will survive two years plus I would have thanked my lucky stars. Now that that time has passed, I remain grateful, but hurt in my bones that more can not seemingly be done to right the terrible wrong which grows inside her. It is so wrong to lose a light this bright, a girl this loving, a daughter and granddaughter and cousin and friend and sassy willful wonder. I ache. We ache. But there is not a lot of time to ache right now as Donna still thrives. We must connect to that while we can.
And so we tried. Her VP-16 was disguised in pudding and her Temodar was disguised in ice cream. These are meds that an adult would swallow in pill form, but Donna was too young for that. Instead, I put on blue rubber gloves to protect my skin from the poison I stirred into her pudding and ice cream. God help me. Donna would sit on her Daddy's lap and we would all resign ourselves, the three of us, to what was done in the name of preserving the life she had in her. Like most young children, Donna did as she was told. It is heart-wrenching to spoon-feed your daughter poison that you know, at its optimum, will provide a few more weeks to her cruelly young life. But that is precisely what we did. A wise RN told us early in that if we let her, Donna would be our guide. We let her, and it was clear to us that Donna wanted to be with us still, despite the injustices of a mother and father spoon feeding her poison-laced ice cream and pudding. Seconds after the last spoonful, Donna would pop up and out of her Dad's lap and race to the kitchen room or play room or to her brother. Yes, she was our guide.
Several weeks later, Donna danced in her studio's annual dance recital. It was Father's Day. Her hair had started to thin, she would lose it again, we knew, and some low grade fevers from the chemo had started. Donna had practiced her dances throughout her time in Bloomington. When we returned, she joined her classes again. Her teacher and studio could not have treated us with more kindness, sensitivity or love. Donna and Mary Tyler Dad were given private lessons to perform with some others in the Daddy-Daughter Dance. It was Donna's favorite. The studio director made certain to accommodate Donna on this day with the knowledge that she would never dance publicly again. We had reserved seats in the audience. We got to watch a dress rehearsal so we could see Donna on stage more than once. A professional photographer was brought in to capture the day for us. All of this was discrete. My guess is that the folks in that audience who knew Donna was dying were sitting in the row reserved for our family. We remain grateful for this beautiful gift of a day where Donna was just another girl, nervous to dance in her first recital.
Somehow we sat in that audience of over 500 proud and happy parents and we watched our girl, knowing she would leave this world much too damn soon. Somehow we didn't wail or convulse or vomit. Somehow we kept this news to ourselves, stifling the urge to yell and scream and rail at a universe that could be so cruel. Somehow Mary Tyler Dad performed with Donna, his Father's Day gift that must last a lifetime. Somehow you're still reading this note. Somehow I'm still here to write it. Somehow my beautiful Donna is not with me.
Tomorrow: The Bubble