This is the eleventh 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.
Just a day after the dismal day I wrote about yesterday, Donna seemed to turn a corner. Our stem cell doc thought some of the intense pain and discomfort Donna had been experiencing, the writhing and moaning, could be attributed to lactose intolerance. Quit the dairy, he advised, and within a few days she should feel better. We did and she did.
Turns out that the part of our body that breaks down lactose is the lining of our small intestines. The potency and toxicity of Donna's stem cell transplant chemotherapy caused her intestinal lining to shed, leaving her no means to process the lactose her body was craving. Donna was so hungry after her return home and we had been more than happy to accommodate this hunger with her favorite foods:milk, mac-n-cheese, yogurt, cottage cheese -- a dairy farmer's dream. And yet, that was the agent of the pain and struggle we had been seeing. We made the necessary changes and Donna transformed before our eyes. The eight hour sessions of misery in my lap shortened each day. Eight hours became six then four then two then poof. "Mama found a cottage cheese that doesn't hurt my belly!" is something Donna would joyfully shout as she ran up and down the hall.
And suddenly we learned that Donna's treatment was over. We had been prepping for the second stem cell transplant, dreading it, knowing what horror the first one had brought. The docs had left the decision to us, we were to decide to move forward with the second one or take a gamble on one and done. For the first time, Mary Tyler Dad and I disagreed. We were torn, but knew that consensus was crucial. That was its own special kind of hell. But early one morning, Donna's oncologist called to tell us that the team had taken the second transplant off the table. They had just reviewed all numbers and determined that second transplants had a 20% mortality rate. Given that no one knew if it carried any benefit (some cancers are only cured with two), the team agreed it was too risky. Hallelujah.
Hallelujah, hallelujah, hallelujah, hallelujah, hallelujah. And so began our life after cancer, though that brings its own fears and concerns. For the first time in eleven months, there would no strategy, no tools to fight the beast. We were left to hope and believe that the beast was gone. Papillary meningioma, that had had its way with Donna, had left the building, but we struggled trusting this. We were shell shocked and thrilled and tired. So very, very tired.
Donna, though, was wired. She felt better each day. She was making up for eleven months of slogging through the muck of cancer. She was 2 and wanted to play and play and play. Each day brought more and more Donna back to us. Skinny and pale with sunken eyes, she came back to us. Stubble appeared, pink cheeks and lips returned, her eyes brightened. Donna had never been more beautiful.
While active treatment was over, there was still the daily insults of cancer. Closets and tables full of medical supplies, lots of daily medicines to endure, weekly port access and trips to the hospital for check-ups and occasional platelets. When Donna's home health nurse came, Donna would shyly cling to my legs. She knew that Phyllis' visits meant a needle poke. As Donna gained health, her fight returned. We had a routine that involved bringing Donna to her changing table and removing her top, which Donna hated. I always imagined she felt so vulnerable with her port visible. I would place my body weight over her legs to prevent kicking and hold her arms at her waist. Donna, through her tears, would say, "One, two, three," and that was Phyllis' cue to poke. It was a quick process, but we all hated it. Moments after it was finished, Donna would sit up, get her shirt on, and be done with it, wanting to show Phyllis some new book or toy she had received. I could not have been prouder of my girl. Phyllis was amazed by her. One day, after we saw Phyllis out -- can you believe I was worried about manners at this time? -- Donna shut the door and said, "You don't like to do that, but you know you have to." She. Was. Amazing.
I wrote at the time, "I am astounded by her brain and how it works and how it changes as it grows. I am left in awe knowing how much trauma that same brain has been in over the past year and yet it still functions so beautifully." Donna, like any 2-year-old, was working to become more independent. She was playful, funny, clever, testing, silly. She used to nap with a foam letter from her bath toys that she would gently place on the pillow next to her and cover with its own blanket. The letter would change daily. Life was so very sweet.
One afternoon we had a clinic visit to check numbers and visit with our oncologist. The nurses agreed to change Donna's needle as it fell on a home health day. As we walked into the tiny lab in the oncology clinic, two of our nurses were prepping for Donna and in the background was Blue Oyster Cult's "Don't Fear the Reaper." With my straightest of straight faces, the indignant and morally superior one, I said to the nurses, "I can't believe you are playing that song in a pediatric oncology clinic." Stare. Our perfect nurse,Tara, said, not skipping a beat, "But it's the cowbell version!" We all burst out laughing and crying together. Yes, life was sweet.
Tomorrow: Family Portrait