“This is the first real summer she’s had in years. She’s missed out on so much . . . ”
Tanned skin and smiles. Suntan lotion and beach bags. The pool has been vacated and the guests are leaving. Grace waves goodbye to her friends and plops into a chair on the deck, smiling.
This day is important.
Having friends over to swim, even though the gathering is limited to two hours, reflects a return to normal childhood. Grace will have to nap before theater class this evening, but at six months out of treatment, her body is finally beginning to recover.
The road was long and brutal.
After a diagnosis of Acute Lymphoblastic Leukemia when she was eleven, Grace endured the grueling thirty-day inpatient stay at the hospital, where her body was pumped full of chemotherapeutic drugs designed to send the cancer into remission. But that was only the beginning. Two years of treatment followed remission, and just when things were supposed to start getting better, they only got worse.
A bout with aspiration pneumonia landed Grace back in the hospital for eleven days. A bad reaction to one the chemotherapy drugs, Vincristine, caused her GI tract to shut down, induced neuropathy in her hands and feet, paralysis of her vocal chords, and damaged her optic nerve.
At one point, Grace was legally blind, and no one knew if she’d regain her vision completely again.
Sometimes she needed a wheelchair or walker to get around.
Then there was the steroid treatment. For five days every three weeks, Grace would transform into a different person - a condition known as steroid induced psychosis. She’d be paranoid and hysterical. She’d scream and cry and lash out at her parents. And the steroids made her bones brittle. Last year she fell and fractured her spine.
Grace is allergic to a whole suite of antibiotics, so when her compromised immune system couldn’t battle a normal infection, the doctors were challenged to find a course of treatment. She also can’t tolerate the medicines that would have eased her pain, so she often had to endure without.
“She’s developed a high tolerance for pain,” Grace's mom, Lori, says while shaking her head.
This terrifying disease, and its effective but devastating treatment, disrupted every part of Grace’s life. But you wouldn’t know it to look at her.
She’s always been a sweet, upbeat kid, and her fight with Leukemia hasn’t changed that. In the face of so much illness and disability, when she could have been depressed and angry, she focused instead on the things she could do. Now eager to start high school in the fall, and planning to take honors classes, Grace is back to dance lessons, participating in theater, and spending time with friends.
Side effects from her treatment linger.
It still takes longer for her to fight off an illness, she fatigues easily, and her bones haven’t completely hardened. But as Grace heads into the house to rest and recharge, her sunny smile follows her, filled with the promise of many bright tomorrows.
Diagnosed with Acute Lymphoblastic Leukemia at 11