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The boys’ hair is growing back. They both have nice coverings of dark fuzz and a few of their friends are almost back to their regular pre-shave haircuts. By now, everyone should have moved safely beyond the stage of questioning looks and sympathetic glances.

I imagine that for some of the shavees from our event, especially those with blond hair and nearly invisible eyebrows and eyelashes, the experience of being bald, at least in that first week or so, was quite similar to the experience of a real cancer patient.  My kids both have dark enough hair (and eyelashes to die for) that they don’t warrant anything beyond a quick double-take. But for some, I’m certain they got quite a bit more than that as they wound their way through the grocery store with mom.

It must have been an interesting experience for the mothers of those kids too — to be on the receiving end of those looks. I know a thing or two about that. It’s not necessarily offensive; I mean, people are naturally curious and often mean well when they cast those big sad eyes on a sick child and his mother. But I spent months dodging sympathetic glances, back in the spring of 2010. Most of these took place at the hospital, because that’s where we spent most of our time during those months and because that’s where it was most obvious why my child was bald. My reaction to people’s stares was dramatically different depending on whether Austin was awake or asleep.

When he was awake, which usually meant he was tearing through the hospital hallways, skipping over tiles on the floor or climbing the low wall in the cafeteria like a balance beam, he did not look sick. Well, he looked sick, but he did not seem sick.  In those moments, I always felt a strange pride when people stared in wonder and confusion at this obviously cancer-stricken child who was nonetheless cartwheeling his way through University Hospitals. I would shrug and smile, as they gave me these looks that turned from sadness to bewilderment to pure delight.

But when he was sleeping, which he often was, slouched over in the stroller as I pushed him from one ridiculously long appointment to another, I got completely different looks. These were quieter looks that people tried to hide from me, sideways glances and quick nudges of the person they were walking next to. “Look,” they seemed to be whispering to their companions. “Look at that kid.” My reaction then was to stare straight ahead, shoulders high, chin jutted forward. “We’re fine,” I was silently announcing back (even when we weren’t). “Don’t feel sorry for me.”

But look at us now. No sympathetic glances for this kid.

You, my trusted and loyal community of readers, have helped me work my way through several major decisions over the past year. First, there was the should-we-or-shouldn’t-we-continue-with-chemo conundrum. Then, of course, came the awful choice between removing Austin’s kidney in a preemptive strike against the possibility of cancer returning thus subjecting him (and all of us) to two years of hemodialysis followed by organ transplant versus trusting that surgery, chemo and radiation had done their job in wiping cancer out of his body. Then there were the smaller decisions about my book and how to incorporate the third section and what to title it. And who can forget the still-unresolved issue of when to send Austin to kindergarten?

But suddenly I have a new decision to ponder and, boy, is it a doozy.

Next year is the tenth anniversary of the St. Baldrick’s event in Cleveland and to celebrate, the planners are trying to enlist ten moms.

As in, ten moms to shave their heads.

Oh man, it makes me nervous to even think about! I want to do it. I mean, I think I do. At least right now, when it’s nothing but an idea, tucked safely eleven months into the future. I’m not worried about how I’d feel that very day. I’ve seen women do it, fourteen of them last week, and they all look strikingly beautiful and very very proud of themselves. (See professional photos from the event here; my family is between 83 and 120.) But the next day or week or month, when they have fuzz sprouting from their heads and have to attend someone’s wedding or a business meeting or who knows what . . . that’s the stuff I worry about.

I know, it’s only hair and it grows back. But it’s hair and it grows back pretty slowly, especially when it’s as long as mine is now. For the past few days, I’ve suddenly found myself admiring my hair, which is not something I’m used to doing.  I’ll catch a glimpse of myself in the mirror and think, uncharacteristically, “Wow, my hair looks so full and shiny . . . do I really want to shave it all off?” Classic case of the grass being greener, I think.

It would make quite a statement though to have ten mothers of cancer patients stand up their together and make that sacrifice on behalf of their children. Ten years, ten moms, ten thousand dollars (each!). That would be my motto.

I know how I am. I know I’ll have moments after the fact when I’m in a major awkward stage and feeling rather ugly, when I would question my decision. But I also know that if ten moms are going to sit in AJ Rocco’s next March and shave their heads, there’s no way I’m not going to be one of them.

We could tell Austin’s life story through his hair.

At birth, he, like his brother before him, had a head full of dark bushy hair. (And yes, for what it’s worth, I did have heartburn.)

At about six months he, like his brother before him, exhibited classic signs of male pattern baldness:

It slowly grew back and by the time he was diagnosed, he had these two spectacular sprouts of hair caused by a double cowlick.  We called them his horns:

Then of course, he was rendered completely bald during his first rounds of chemo. Innocent bystanders used to comment about how their children had also been bald as babies and I could just never let it go and instead had to say something like, “Oh, he wasn’t bald as a baby. This is because of chemo.” I always said it in a cheerful voice so as not to make them feel too bad, but they rarely knew how to respond after that.

Early chemo days

Still smiling even though he had to bathe in a shirt
thanks to that damn Broviac line!

And then, by the spring of 2008, my cancer-free toddler grew new hair. And, whaddya know, that trademark Gallagher black grew in blond!

As time went by, it darkened but the first growth was still lighter than the rest prompting an amazing number of people to ask if I “did his tips.” Really? He wasn’t even two. Who would even think to color a two-year-old’s hair?

By last summer, it was mousy brown and extremely long. Here he is getting his shaggy rock star locks trimmed by Grandma Gallagher:

Then winter arrived and with it that brutal rogue that is cancer. On the verge of losing all his hair again, Austin helped out with shaving Braedan’s and Daddy’s:

Shortly after starting chemo, I was coming away with clumps every time I ran my fingers through his hair. Look closely at the sheets behind him in this pic taken while he was sedated for radiation:

Lintbrushing the sheets just wasn’t enough any more, so a shearing was in order:

Then a very strange thing happened. His hair began to fall out. No, that’s not the strange part, we were expecting that. The strange part is  that it began falling out in bits and pieces with these bizarre patches left behind.

Each day, the patch changed slightly as a few more random hairs fell out. It reminded me of a computer generated image of the polar ice caps shrinking over time due to global warming. Day by day getting smaller and smaller until there was simply nothing left.

And then, within a few short weeks, it was gone, with only the eyelashes and eyebrows remaining. Another six weeks of chemo and those too had vanished.

Until one morning last week, when he woke up, felt his head and announced, “I think I have more hair today. I need to look in the mirror.” Which brings us to today (yes, he’s wearing a cape — and why shouldn’t he?):

And somehow, through it all, what remains is that smile.

and a little paint on his nose

Check this out:

Okay, so maybe you can’t see it that well but trust me, there is hair all over that head. Starts as a swirl in the back, moving outward in concentric circles of dark hopeful fuzz. I know, who describes hair as “hopeful,” right? But trust me again, this boy’s hair definitely conveys hope.

The dairy-free option of choice: “blue raspberry”

Another boy with a headful of hair

So much for dodging sympathetic glances, something I’ve been actively doing for the past six months. Nobody even looks twice anymore. Except maybe to see how cute they are.

Another thing to check off the list, another accomplishment made, another fear overcome.

Austin had his last radiation treatment today and, just like that, one big thing’s done. Radiation had seemed so scary to me; I’d imagined his skin burning or, at the very least, itching in the spot where it was zapped. This is a kid who gets red and patchy from bathing too long, after all. But no, he had no side effects, nothing at all. Aside from those two Mondays of throwing up, it was as if all they did to him each morning was sedate him and then wheel him through the maze of hallways and elevators from the fourth floor to the basement and back again. Certainly nothing as scary as radiation could have happened to this child who has been running happy circles around me all day.

We did have a long day at the hospital (in between — and mostly before — that happy circle running). He needed another nuclear scan which, rest assured, involves nothing nuclear. It’s just a dye that’s injected into his blood stream that is then filtered through the kidney, offering a good assessment of kidney function by drawing blood on a set schedule over five hours.  We did this test again so soon to determine whether his recent chemo and radiation have had any immediate effects on the kidney and also whether we need to adjust the dose of the next chemo, which includes a new drug (also dialyzed by the kidney, of course — couldn’t some of these things be filtered through the darn liver already?).

But he was a champ and when Mark came home and asked Austin what he’d done all day, he cocked his head to the side and said, “Oh, jumping. Just jumping,” which was a pretty accurate account.

The other thing he did, however, was start to lose his hair. When I woke him early this morning (for the last time!), you could see it was thinner right at the spot where he’d been lying on the pillow. Then, as we arrived in sedation and I pulled off his Spiderman hat, it was obvious — this boy’s hair was falling out. I could run my fingers through it and pull out handfuls at a time. All day, it was all over both of us, covering our clothes, getting stuck in our mouths, everywhere.  I commented to my mom this afternoon that I wish he’d let us buzz it short and she said, “Oh no, but won’t that make you sad?”

Well, yeah, of course it’ll make me sad, but it’s going to happen. This child will be bald, whether we like it or not.  Better we trim it now than spend the next five days with hair falling in his eyes and getting stuck on his snotty nose. So tonight, Mark took my wild-haired boy up for a bath and brought down another bald child. Almost bald at least, with lots of random patches because he wouldn’t sit still (shocking). Looks sort of funny now, but it’ll even out soon enough.

That smile hasn’t gone anywhere though.

February 2020
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February 2020
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