This is the twenty-ninth 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.
Last month ended with Mary Tyler Dad and I clutching to The Bubble. But you can’t clutch a bubble, can you? It just doesn’t work. The bubble pops and — poof — it’s like it never existed in the first place.
The day after Donna’s fourth birthday, we had a set of scans done to determine what type of effect, if any, the oral chemo was having on her brain, spine and lungs. Late that evening we got a call from our oncologist that there was a pneumothorax in Donna’s left lung. Left untreated, it could result in her death, suddenly and without warning, and, he said, it would not be a pretty death.
The recommendation was to be hospitalized and have Donna treated with “pure oxygen.” The idea is that the pureness of the oxygen would encourage the lung to seal itself, correcting the problem. Most likely, the lesions on Donna’s lungs, those “immunerable” lesions, were eating away at her tissue. It was unbelievable that our daughter with a brain tumor would die of lung disease.
As we had done, we used Donna as our guide. Her quality of life was still outstanding. As cumbersome as the meds were, she was tolerating them remarkably well and, as she was wont to do, thriving. The docs agreed that because of that, treatment was in order. Mary Tyler Dad and Donna packed up and were admitted that evening. This was our first hospital stay since Indy and we opted for a man:man defense. I would be at home nights to nurse Mary Tyler Son, and Donna and Daddy would have sleepovers at the hospital until discharge.
Well, the pure oxygen didn’t work. Possibly because Donna hated the mask that was required for it to be administered. When you know your child’s time is so limited, to see her in a bed strapped to a mask she fears, will wreck you. All docs involved moved to the idea of a chest tube to drain the liquid gathering in Donna’s chest. Ironically, it was called a “pig tail.” Such a benign name for such a tool of torture.
It was inserted easily, under anesthetia. When Donna came to, she was lovely and hungry. Three hours later, after the anesthetia wore off, Donna began to experience pain. Deep pain. Wounding pain. Intense pain. Donna begged for medicine, wailing. Nothing could be administered quickly enough. And God love them, as hard as the team tried, as responsive as they were to her pleas, Donna’s pain was difficult to manage for twelve hours.
Once morphine on a constant drip had been instituted, things calmed down. Donna napped. Mary Tyler Dad and I took a break in the hall that quickly dissolved into our own tears. Mary Tyler Dad wrote, “We are now the scary parents at the end of the hall who have no more options open. We feared them, and now we are them.”
Those of you who are Cancer Parents know who I am talking about. The crying, sobbing, broken parents who wail loudly or quietly, but you hear it just the same. When you are new to treatment, you see them and their displays in the halls — the only place available to step away from your child and the crushing news that there are no more options for their child. You turn away because their pain is too close, too scary and too unbearable. It is their pain, not your pain, and you don’t want to be near it. Until it is your turn and it becomes your pain.
All apologies to the parents who witnessed the depth of our pain that evening.
Slowly, the chest tube did its work. The hole in Donna’s lung sealed and we went home late on a Monday night. Tuesday was lovely. Our girl was back! She was the same brightful, shiny girl we remembered. The pain seemed a steep price to pay, but the right choice to have made. We were grateful.
Early Wednesday morning, though, Donna, sleeping in bed between us, seemed different. Her breath was fluttery and rapid at the same time. Shallow. I noticed it, Mary Tyler Dad noticed it. Moments later, Donna awoke. “Are you having trouble breathing, girl?” I asked. “Yes, Mama.” We called the hospital and were told to come in straight away. Donna was not comfortable. Unhappy. Listless.
As we pulled into the hospital driveway, we ran into Dr. Stew who asked after our girl. When he saw her, he told us he would be to the ER soon. The docs did their thing, more x-rays. Horrible x-rays that involved Donna sitting in a wood chair, elevated above us, with her arms outstretched, and straps holding her thin wrists to a board behind her. Christ-like and execution-like simultaneously. The memory of her strapped to that board will plague me until the day I die.
Mysteriously, we got word that all was well, but she was so unhappy, so uncomfortable. She missed her brother and grandmother. When we showed her a photo of Mary Tyler Son, Donna slapped it away and screamed, “NO, the REAL one!” A few moments later, upon further review, a new pneumothorax was found on the right lung. The dreaded oxygen was advised and started again. More masks.
Donna fell into a deep sleep. She was unarousable. Our team had assembled across the hall and asked us to step out and talk with them about a plan. Mary Tyler Dad wrote at the time:
“We decided with great sadness that we will be together as a family, at home, and we will let the disease take its course.
Why? How can we do this? We’ve said often among ourselves that Donna would provide our cues. She was listless, exhausted. She wanted to be home with her brother. We have fought and fought and fought this fucking thing. It has taken the deadliest poisons and hottest burns and sharpest knives and just grew right back. No matter what, her time is limited now. We decided today that instead of trying to make it as long as possible, we will make that time as comfortable as possible.”
We said heartfelt and tearful goodbyes to these amazing humans who were responsible for caring for our Donna. Who worked like hell to allow Donna to grow from a toddler to a young child. Our neurosurgeon came down in her scrubs, fresh from surgery when she heard the news. Four of our nurses from the oncology unit came down. And our beloved Dr. Stew, who will never understand the esteem in which we hold him so dear to us.
Science had failed our girl, not these beautiful people.
Advance directives were signed, arrangements were made for oxygen to be brought to us. Palliative care was quickly changed to hospice care. An administrative box was checked and our girl would die. Calls were made and family from the east coast scheduled flights to be with us for Donna’s death. They brought black to wear.
We walked across the hall, back into the ER, to find Donna resting comfortably with a favorite volunteer at her side. Shortly after we arrived, Donna awoke. She smiled. She was attentive and affectionate. We told her we were going home. She was happy. We took one last tour of 4 West and it was anticlimactic. Nurses were busy with other patients. Life moves on, even in Cancerville.
Walking out of the hospital, I felt liberated. Fuck you, cancer.
When we got home, Donna cheered to see her Da and Auntie. She ate, and ate a lot. She wondered when we would go to the Target. When we would go to the Target? What the what? It never worked this way in Lifetime movies.
Well, we went to the Target. The last thing I had said to Donna the night before was that we would go to Target in the morning. “The one with the escalator, Mama?” she had asked, hopefully. “Yes, Donna.” We spoiled our girl rotten that night with Fruit Loops (“rainbow cheerios” is what Donna called them and they were contraband in our home) and frozen pizza and games and toys. Target is still the promised land for me.
Donna woke the next day and wondered what was for breakfast. That night she made a guest appearance at the annual Run for Gus, a 5K that raises funds for pediatric brain tumor research at Children’s. She wore her tutu and posed with the runners of Team Dancing Donna wearing their own tutus. Donna had some things to do and didn’t get the memo from cancer saying her time had come. Family joined us at the event and we celebrated and were happy, so happy.
Until the Cancer Mom spoke, a featured speaker to rally the runners. She talked about her own daughter and the brain tumor she had fought, “successfully.” She proclaimed that she “wouldn’t let cancer take her daughter.” Now why hadn’t I thought of that? I had no idea it was possible to simply refuse cancer my daughter. Who knew? Bitter humor, I know, please forgive me, but words matter, people. They do.
Donna woke the next morning and the next and the next and the next. Always demanding to know, “What’s for breakfast?” I had a hard time sleeping next to her. I would fall asleep easily, my head searching for the comfort of girl and pillow, but inevitably, I would wake and watch Donna’s breathing. It was anxiety provoking. I learned to move into the living room and soothe my fears with bad tee vee. It was easier than sitting in the darkness watching and waiting.
So much more happened this month. Donna’s guardian angel, her dance teacher, her CBLO (Chief Bucket List Officer), arranged for a private dance party for her and her playmates at the studio where she took lessons. This same gal arranged for the Field Museum to gift Donna with a box of all things dinosaur, as Donna was obsessed with them and their bones. And for the Joffrey Ballet Company to send along a pair of prima ballernia toe shoes, poster, and coffee table book about the Company. And for the Auditorium Theater to open their doors on a weekday afternoon so that the sweetest dancer in the world could dance on one of the finest stages that exist. All of these things happened just days after that last ER visit. Life was improbably good. We made a new bubble and climbed right in.