Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Thursday, May 12, 2005

Give Me A Head With Hair

Give me a head with hair,
Long beautiful hair,
Shining, gleaming, steaming, flaxen, waxen
Flow it, show it, long as God can grow it, my hair.
- James Rado & Gerome Ragni -

hopes dance best on bald men's hair
- e.e. cummings -

At the beginning of this school year, Steven's bald spot was a big source of embarassment for him. One day he came home from school crying after being teased about his voice and his bald spot.

His hair has grown back, but it's far different from what his hair was like before radiation. Steven had curly, thick and the most amazing hair, one of the really cool things about his hair was that it grew in in three distinctly different colors. It was his crowning glory.

Radiation is much harder on hair than chemotherapy, almost all chemo-induced hair loss is temporary, but radiation kills the hair follicles permanently and only the most hardy of them survive.

Steven before the hairpiece

Steven's hair is back, but very fine and thin and ever so downy and soft, exactly like when it first came in when he was a baby. We enjoy how wonderfully soft it is, but it doesn't cover his scalp as well.

His hair has grown around his bald spot, but the bald spot is still, for all practical purposes, bald. His incision scar is in the bald area also.

We love him however he is and wouldn't care if he never did anything about it, I never even notice if he's wearing a hat or not. Maybe it's a fourth grade thing, suddenly all the kids are starting to care what they look like, even the boys.

Steven doesn't pay any attention to whether or not he wears a hat when he's at home, at St. Jude, or around people that are loving and friendly toward him. He takes it off in class, but won't leave his classroom without it.

When he heard that the Hair Club will treat kids for free, he was interested in getting a hairpiece.

They made him a hairpiece from natural hair. It is attached to his scalp with extremely sticky tape, that is supposed to be able to last up to four days without removing it. The hairpiece is cut and washed along with the rest of his hair.

Steven and Suki, the stylist who designed the hairpiece

Steven has a major phobia about tape, we never let them put on a bandaid after a blood draw, the only time he'll allow tape is the minimum amount necessary to hold his IV in place when he gets one at St. Jude.

So I wondered how he would tolerate the hairpiece, which relies on very sticky tape to hold it in place.

When the stylist applied the hairpiece to his head, he whimpered a little, not because of pain but because of the tape being applied to his head, but he never moved, for him this is an amazing achievement.

Steven was very happy to have the hairpiece and not to have to feel like he needs to wear a hat everywhere he goes.

When he's around people he feels comfortable with, he isn't conscious of whether or not he's wearing a hat, but when he's around people he doesn't know well or if he's at school outside of his classroom, he is very uncomfortable without a hat.

So, we'll give this a try. We've removed it once so far (using solvent to help dissolve the adhesive), it hurt him a lot and he cried. We'll see how things work out, but this is something he really wanted to do, so we'll do the best we can to make it work for him.

And many, many thanks to the Hair Club for treating Steven and other kids like him for free.

More evidence of the angels among us...

- Kathleen


Anonymous Sandee said...

What a great piece :) he looks fabulous!

May 19, 2005 12:29 AM  
Blogger doughgirl said...

I just stumbled across your web site and I am so glad I did. You filled me with gratitude again today. You brought me back to a place that I've tried so hard to forget...I know that I should never forget, and now I promise i never will.
I look forward to stopping by and keeping up with your journeys. Thank you so much for the gratitude, the gift you have given me back today :)
You're hair looks wonderful !!

May 19, 2005 6:47 PM  
Blogger Cav said...

He looks great - with hair or without - because he has that sweet smile. That is awesome about the hair piece though, anything to help him with his confidence. School kids his age can be brutal. I know he has it much harder than me and my heart goes out to him.

May 20, 2005 10:18 PM  
Anonymous Anonymous said...

What a sweetie. Steven looks great with the hair piece and I hope it gives him a bit of normal back into his life and makes him happy. Thanks for sharing him wih us. Take care Janet

October 27, 2006 3:57 AM  
Anonymous Anonymous said...

God Bless You. all my wishes....take care
no one deserves that... god is with you

October 24, 2008 10:00 PM  
Blogger Lukas said...

Looks very good! Good luck for the future!

October 26, 2008 3:39 PM  
Anonymous commenangel said...

I came across your website, and I am so glad I did. I really have a big heart for children who have to go through this, they are thousands of times stronger and most people in the world today. He's quite the trooper! I want to thank you for what you made me experience reading your blog.

January 04, 2009 5:50 PM  

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