Be Bald and Free Day

Sorry I haven’t been keeping up with my National holidays. My brain is jello. I start a sentence only to jump off track – or is it jump the shark? Either way, I’m over it. I am sincerely ready for a new head. Too bad insurance has a strict policy of approving only one head per person – lifetime max – and I received my allotment in 1993 during my thyroidectomy.

So. Be bald and free day. When I started writing about these National holidays this past June I had no idea how many would fit so well into my life. It seems like I always have a story to relate to whatever holiday it is. Is it a gift or just the product of too much zaniness? Ooooh. Zany. I haven’t used that word in a long time.

As many of you know, my son is bald. It’s not an early onset of male pattern baldness but the aftereffects of chemotherapy. If having cancer wasn’t bad enough, Ben does face the prospect of becoming a victim of the dreaded male pattern baldness since it does genetically pass down through the mother.

While my biological father has a head full of hair (at least he did 10 years ago – the last time I physically saw him) both of my grandfathers were thin on top. My maternal grandfather, who we lovingly called “Little Grandaddy” was bald. He was tiny AND bald. I think he barely cleared five feet but he made up for his short stature by enjoying the company of large women. He was super cute. And he always told me that I was his favorite. Now, my mom is the youngest of eight siblings and there’s LOTS of grand kids. I’m sure he told all of us that we were his favorite but we never shared that with each other, guarding our “special status” from the other kiddos, but I’ve cherished the thought that I was really and truly his favorite my whole life. I mean, really. What’s not to love about a little red-headed freckle faced girl?

So. My bald-headed son. Ben is a very wise little man. He has a bit of silliness to him but when you get right down to it he is a super serious kid. Sweet, sensitive, serious. And seeing how his childhood has been mostly composed of treatment that should never happen to a child, well, it just adds to his little old man persona. Yesterday, we learned that his ANC is only 36, which means NO visitors. As we were leaving the clinic Ben broke down in tears. He was crying that he can’t be like other kids. And he actually said “I’m a shut-in”. He is desperate to visit with some friends but it’s just not possible at this time. Especially with all the flu bugs going around. It’s just not fair. Or fun. Damn cancer.

We try to insert fun into this mess of a life whenever we can. For instance, I’m always trying to get Ben to ask people “How does my hair look?” He looks at me with his little crinkled eyebrows and says “Oh, mom. I’m not going to say that.” It’s humbling to realize that your eight-year-old son is way more mature than the woman attempting to play the role of mother. Oh well.

After Ben had his first round of chemo back in 2004, I was expecting his hair to fall out right away. Like that first drop of chemo would hit the eject button for his hair and it would come shooting off of his head. It didn’t happen. And once I got past the disappointment of seeing projectile hair I fantasized that maybe it wouldn’t fall out at all. I mean, other than the bruising around his eyes (classic indicator of Neuroblastoma) and the tubes hanging out of his chest, one would never know that he was a sick kid. His exterior was completely normal. It was the inside that was a mess – tumors in his body, cancer cells invading his bones and bone marrow, cancer eating through his pelvis creating actual holes in his bones. It was a mess inside.

That first stay in the hospital during his initial diagnosis was a very long three weeks. After receiving a full week of chemo we were discharged. Ben spiked a fever just two days after being discharged which landed us back in the emergency room at Nationwide Children’s. One of the “benefits” of being an oncology patient is that you don’t have to wait out in the lobby with the masses, you’re put in a room immediately to avoid the ER germs. It was determined that Ben did, indeed, have a fever and would have to be admitted. Infections can be fatal for the oncology kid so they don’t play around with it.

As I was holding Ben on my lap in the ER triage room I began to stroke his hair. It felt “crunchy” – like a bad perm or something – and as I was trying to soothe him hair started falling out in my hands. His beautiful red hair – coming out in clumps. I knew that cancer was making a mess of him on the inside, but the hair loss was a tangible indicator that this was one sick little kid. It broke my heart.

When we told Ben that he had relapsed one of his bigger concerns was losing his hair again because he didn’t want anyone to make fun of him. So far, all of his friends have been really supportive. A couple of his friends even shaved their head to support the Bean. The outpouring of love and support has been simply amazing. And, this time, despite being older and understanding more about what he’s dealing with, he’s handling his hair loss just fine. After all, he does have the perfect head for it. 🙂

Bald is beautiful. You never have a bad hair day. You don’t get wind blown. You’re aerodynamic. And, your family can play tic-tac-toe on your head with a crayon while waiting for a table at any restaurant that gives away crayons with the kid’s menus. Benefits are endless, as long as you’re willing to look for the silver lining. And we’re trying.

More later. 🙂

3 thoughts on “Be Bald and Free Day”

  1. The thought of a bunch of little 8 y/o boys shaving their heads for the their friend is so sweet.

    What a bunch of great boys with awesome parents.

  2. And, don’t forget, you can draw a pumpkin face on their back of their heads a la “It’s the Great Pumpkin Charlie Brown”! That was always an enduring image in my mind when Finn was bald (and let’s face it–the kid has a head the size of a melon, if not a pumpkin!).

    Declan is already growing his hair in preparation for his St. Baldrick’s shaving next March! Finn says he’s doing it, too, this year. We’ll see. . .

  3. Hello all –
    Wanted you to know that you are in our thoughts and prayers even though we are far away. I have been reading about your medical expenses and wanted to suggest something. (maybe you are already aware) There is a site called MyPoints.com that gives you points for clicking through emails. The points are redeemable for mileage points, prepaid visa cards and lots of other gift cards. You can also accrue points for online shopping. I have been doing it for a couple of years now, and it works. You won’t make great money at it, but if your friends and family sign up as well and would be willing to donate their cards it will definitely offset some meals out and hotel stays. It won’t clog up your e mail either – I get 1-3 emails a day.
    I hope this helps, and thanks for the info about how to donate. It looks like you had a great time at the benefit, and we are sorry that we weren’t there to help.
    Take care,
    Cathy & Bernie

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