I Am Still Me Shirts

So… Well… Okay

**Blog post by a Dragonfly Mom


Bad Hair Day

(Source: http://caronbergen.blogspot.com/2011/02/bad-hair-day.html#links)

So, this week I was asked by Ria Davidson, (a friend and co chairwoman of a new foundation formed to help bring joy and comfort to children, teens and young adults with blood diseases at Cincinnati Children’s Hospital and their families called “The Dragonfly Foundation”) if I would write a letter to be included with a grant application about hair loss for teens undergoing treatment. If you don’t know, my son Kyle spent a good part of last year battling Hodgkin’s Lymphoma, before the Dragonfly Foundation was underway. 

I was honored to be asked to help participate in providing ideas and relief to families helping their kids, teens and young adults through this awful side-effect of most cancer treatments. It really got me to thinking about my hair. While I’m not obsessed with it, I acknowledge that my hair – caring for it, cleaning it, grooming it, styling it, coloring it – occupies a fair amount of my time and a significant chunk of my budget. It is easy to become blasé about something that fills our daily lives but we rarely allow ourselves to imagine what it would be like if our hair was gone. 

So. I have included my letter and pictures, and the wise words of Charlie Chaplin: “Hair is vitally personal to children. They weep vigorously when it is cut for the first time; no matter how it grows, bushy, straight or curly, they feel they are being shorn of a part of their personality. ” My Autobiography, 1964

Yesterday I was running late for work, as I am wont to do every several days or so. As a consequence, my shoulder length hair received a lot less attention than normal – a finger blow dry and a few quick run throughs with a brush and I was out the door. Of course, I received numerous compliments at just how great my hair looked! And then the usual Bad Hair Day Roundtable started. “My hair is too thin. My hair is too thick. My hair is too greasy. My hair is too dry. My hair is too long, too short, too hard to manage, too gray.” Around and around and around it goes…

But as I laughingly walked into my office, I was greeted by Kyle’s freshman school picture. I still have my hair to fight with; to stroke lovingly; to flip back impertinently; to preen over and complain about. But who would I be if I didn’t have my hair? What if my bad hair day was a no hair day?

Well, I’d still be me. But it isn’t easy being you when your most common identifying feature disappears. My son Kyle was diagnosed with Hodgkin’s Lymphoma in June of last year. Being a 14 year old, Cincinnati Children’s Hospital invited and encouraged Kyle to be a part of every discussion about his treatment. At the end of his first exam, after hours of medical history, blood work, paper work and physical exams, the doctors in the room looked at Kyle and asked, do you have any questions? And he did. Just one.

Will I loose my hair during treatment? And jokingly, the pediatrician nodded toward the oncologist and said if he doesn’t make your hair fall out, he’s not doing his job. Which meant yes, your hair – the hair on your head, your eyelashes, your eyebrows, arm hair, leg hair and other places in between – would disappear.

And so, Kyle was faced with the same choice so many other cancer patients wrestle with – shave my hair off before treatment begins or wait and see what happens? Kyle chose the latter, daring cancer and chemotherapy to take his hair from him. Sadly, it did, falling out in a random, patchy pattern, leaving a cloud of hair everywhere he went. So, out came the hats. Being summer, hats served a dual purpose – to cover the ‘calico-cat’ texture of his head and to protect him from the sun.

Baseball hats gave way to knitted caps which eventually went away altogether. We soldiered on through successes and set backs tolerating the stares and whispers of the curious and sometimes insensitive people around us. Finally Kyle was pronounced in remission in December. Slowly, his hair has crept back, different than before and fascinating to watch. But during his months of treatment, no one at the hospital ever talked with Kyle about his hair loss, about how he felt or offered suggestions about what we, his parents could do to help him. And I guess we didn’t expect them too; we wanted the doctors and nurses to cure his cancer, first and foremost.

Enter the Dragonfly Foundation. Their mission is simple – to bring comfort and joy to kids and families with cancer and blood diseases. (NOTE FROM TDF: Our mission was modified to “enduring cancer and bone marrow transplants in 2013.) The goal of the “I Am Still Me”(TM)  Program is to change the stigma of “chemo kids” and to make hair loss as a result of treatment less traumatic for children, teens and young adults. In the process, they are hoping to remind the public that we can’t forget to care while we wait for a cure. Even though our family hopes and prays that we will never ever need the “Hairy Fairy” to visit us, we understand all too painfully how easily and cruelly a teenager can be defined just by his or her continual ‘No Hair/Bad Hair chemo days.’ Programs like these two could have made a world of difference to us.

For several months now, Kyle has complained bitterly that his high school freshman picture (at left) is displayed prominently in my office. “Mom, I hate that picture – it doesn’t look like me”, he says. Laughing, I pulled out his first studio baby picture, and I laid the two pictures sides by side. “Doesn’t look like you?” I said. “Sure it does – the same bright eyes, the same beautiful shaped head, and the same left sided, lopsided grin, complete with a dimple.” Studying the pictures, he began to laugh. “Yeah, he said, “I guess I do still look the same. Weird, Mom!”

Pediatric cancer can rob you of so many things – hair, health, wealth, strength, sleep, even dreams of the future. Kids, teens and young adults with blood diseases can become defined by the disease and nothing more simply because of how they look. But the “I Am Still Me” program can provide that simple first step of restoring their dignity. What a small price to pay!