Even at 4 years old, she was spot-on.
After being isolated at home or in the hospital for four months, getting Neupogen injections to boost her zero white cell count, watching absurd amounts of TV, and hanging with mommy, sans play dates, life after a cancer diagnosis meant that our world felt too good to be true.
Daisy had been born with gastroschisis, a congenital condition in which her intestines developed outside her body, she had a small bowel, liver, and pancreas transplant, which led to a lymphoma, caused by her compromised immune system.
Whether it was attending birthday parties, going to Kindermusik lessons, or watching Daisy finger paint with her classmates, we had finally joined the ranks of families with healthy children, a secret club of sorts to which we had been denied membership.
For years, I watched them from afar – sledding, exiting Mommy and Me yoga class, licking ice cream cones – which gave my already-aching heart a double shot of envy. But we had dodged fate, and my daughter was still alive.
When Daisy was diagnosed with lymphoma eight years ago, I sat in a tiny, dim hospital room at Nebraska Medicine in Omaha with Dr. Harper, her oncologist, afraid to say out loud what I couldn’t turn off in my mind: my daughter’s life expectancy.
“On a scale of one to 10, how sick is she?”
“An eight,” he said, and prescribed four months of chemo, or “Chemo Light” as they called it, meaning the toxic drug cocktail was less potent than traditional therapy. Of course, without it, she would not have survived.
A few weeks ago, we saw Dr. Harper for her annual check-up. We sat side-by-side in the bright waiting room, fiddling on our phones, facing the play area in which she once romped around a faux tree, played with puzzles and blocks, oblivious to her fate.
Seeing Dr. Harper feels like coming home. I have a mix of love for a man who saved her life, supported us through unbearable darkness, and has seen us each at our worst, as well as a twinge of dread, as he represents a porthole to our past, one which could never guarantee me she would have a future.
Our visit marked a major milestone. For the first time, he spoke candidly in front of her, to her.
For years, after he examined her, I’d say, “Hon, please return to the waiting room while mommy and Dr. Harper talk, okay?” I’d plaster a fake smile on my face and hope she wouldn’t notice, eager to get back to the toys in the waiting room.
Not this time.
Twelve year old Daisy asked questions, making sure she understood which contact sports she needs to avoid – she has an enlarged spleen, which could burst – and how she needed to notice any changes in her body, like lumps.
“It’s important to understand what your limitations are and how to take care of yourself,” Dr. Harper told her.
“I get it,” she said.
When Daisy was an inpatient regular and our social circle included nurses, doctors, and Deb, a hospital cafeteria worker who doled out french fries, smiles, and stories each time we were allowed to escape the confines of her room, I feared this might be my daughter’s only shot at survival. It was our real home, and Daisy was like the mayor, parading through the halls, waving at doctors, and standing at the nurse’s station belting out her then-signature song, “Tomorrow.”
Years later, Daisy much prefers focusing on the start of middle school, and just wants to be a typical kid. Like a Polaroid, her awareness of being sick has developed over time.
For years, I kept a gratitude journal. Each time we left the hospital, my first entry was always, “We are home.” How can Daisy appreciate how far she has come to survive if she doesn’t acknowledge where she started?
But rather than look back, she wants to charge forward, join show choir, make new friends, and buy Cheetos from the cafeteria vending machine.
And that, I realize, is the best medicine.
Joey Hoffman is a freelance writer. Follow her on Twitter @joeyhoffman.
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