Adenoid cystic carcinoma caregiver: Letting go as pediatric patients grow up

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FaithLeonard.jpgFaith Leonard wasn't sad when her son, Shane, left for college. While many of her friends in the same situation shared a tearful goodbye with their children, Faith was happy.

Just a year earlier, Shane had undergone seven weeks of proton therapy treatment for adenoid cystic carcinoma at MD Anderson. Faith and her husband Bill didn't know if Shane would live, let alone attend college.

But with his cancer in remission, Shane was ready to begin his freshman year, and his parents were grateful this day had come.


"We're so thankful that he's well, and that trumps everything else," Faith says. "Because we had such a big problem in front of us, now everything seems easy."


Adenoid cystic carcinoma treatment: caring for her son

It wasn't until she returned home that Faith realized the hole left by Shane's departure.


At a time when most of his peers were exploring their independence and becoming less reliant on their parents, cancer had left Shane with no choice but to become more reliant on his mom and dad. His survival had depended on it.

In spring 2011, just as Shane was nearing the end of his junior year of high school, a doctor had confirmed Faith's suspicions: the lump in Shane's neck was something much more ominous than a swollen lymph node. It was a type of cancer so rare for Shane's age that MD Anderson only had about six recorded comparable cases in the last 40 years.


Shane and Faith had always been close. Of her four sons, Shane was the one she could count on to willingly tell her things. But during Shane's adenoid cystic carcinoma treatment, their bond grew stronger.


Learning to let go

Caring for Shane had consumed Faith for so long that letting go was more difficult than she'd first realized. During Shane's first year of college, Faith often woke up in the middle of the night with an overwhelming feeling that something terrible had happened.


"My heart is still with him," Faith says. "You just feel a pain that's always there until I see him again and then it's gone ... and all my kids are back with me."


While her friends with children the same age worried about their kids staying out of trouble and getting good grades, Faith worried about Shane's health. She wondered if he was doing the nightly fluoride treatment that protects his jaw, left vulnerable to infections by radiation. She hoped he was putting sunscreen on the scar on his neck, a souvenir from his treatment. 

Faith often called to make sure he was doing those things, leaving Shane, like most kids his age, irritated. But little by little, Faith has learned to let go.


When Shane left for his sophomore year of college in September, he stepped on a plane alone, unlike the year before when both his parents went with him. Faith doesn't bring up the fluoride treatments anymore. And she doesn't wake up in the middle night with an overwhelming sense of doom and gloom. She stills worries, of course.
"It does get easier, but I still miss him," she says. "You just have to hope you've done your best and let them go."

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