For children dealing with a cancer diagnosis, losing their hair can be a devastating experience for both patients and families. Suddenly, their appearance changes and the whole world knows what that means – they are identified as a cancer patient. With all the other changes happening in their bodies, hair loss can be a devastating side effect of treatment.
The Dragonfly Foundation created the “I Am Still Me” program for children dealing with hair loss. It helps erase the fear and embarrassment by letting children find their community and know that they are not alone. No matter how much their outward appearance might change, they are still strong and proud.
Venue Cincinnati is so proud to share one of the stories from this special program. Meet Noah!
I was diagnosed with adrenoleukodystrophy at birth through newborn screening. My parents found the human genetics, neurology and endocrinology teams at Cincinnati Children’s Hospital, who have been monitoring me since birth. I have been having regular MRIs of my brain and checks of my adrenal function since birth.
When my MRI came back showing cerebral development of my genetic disorder, everything moved really fast! My parents got us in to see the bone marrow transplant team at Cincinnati Children’s, and we learned a week after diagnosis that my twin brother was a match to be a donor. We also learned I would lose my hair as a result of the chemotherapy and related treatments. My parents told me how I was getting all of this done to be able to protect my brain and that losing my hair would help the doctors get an even better look at my perfect head to make sure I got better.
My dad and I shaved our heads right before I went into the hospital for my transplant so that I controlled when I lost my hair. I looked like a Minion, and my dad looked like Gru! In the hospital, some of my hair grew back before my treatment, so I did lose my hair again after the chemo. Child Life came in and set up a barbershop just for me and made it fun to get my second shave to remove the rest of the regrown hair. The morning after, the HAIR FAIRY came and left me gifts to open while I was sleeping for being so brave!
After getting my head shaved, it was fun to have a new “hairdo,” and I made sure to show all my family and friends the new look every chance I got. My doctors said I was one of the bravest boys they had met and that I showed chemo who was boss and refused to let it get me sick or tired. I had to check in and make sure my dad and my papaw kept their hair shaved, so they looked like me, and they did a pretty good job of keeping up!
While I was bald, I really liked to wear hats, especially anything with Minions on it (since I looked like one, you know). My mommy and daddy did an awesome job making sure I had plenty of fun things to do after I got my chemo so that I could stay active, happy and engaged. The doctors can’t prove it, but they said that having so much fun stuff in my hospital room was a big reason I stayed so active and playful and feeling good when going through my treatment.
I was in the hospital initially for 42 days. The day I “escaped” and rang the bell was one of the happiest days for my family and me to get to go back home. Going home still meant coming up to the hospital a lot to see my doctors and make sure I was recovering the way I needed to. It also meant there was a good chance I would probably end up back in the hospital for monitoring, even for minor things.
So far, I have had three trips back into the hospital for another 13 “sleeps,” as I call them, and my nurses, doctors and Child Life friends remembered everything about me when I came back. It made the really hard days of being back in the hospital as good as they could.
My hair started growing back about three to four months after my treatment, and it’s darker and thicker than it was before. Some of my medicine also made me grow hair all over my body! I call it my “fur,” and some of it got so long that my mommy and daddy had my sideburns and ear lobes shaved because they looked so funny!
I still have short hair and wear a lot of hats, but hair or no hair, I am still me!
Can you help The Dragonfly Foundation with its mission to support children fighting cancer? Visit Dragonfly.org to donate or find more information.