All Aboard the Donut Ride

Dumbledore shares with us the difference in perspective between mother and child on scan day.

Little Warrior, age 5, is very excited about tomorrow. She has tried on several outfits, discarding those with metal snaps or metallic glitter, trying to find just the perfect one for her outing. “I need to have a snack before I go to bed,” she reminds me. She’s giddy. She can’t wait. Tomorrow, she gets to go on “the donut ride.”

Looking through my eyes: tomorrow, we will get up at the insane hour of 5 am and drive down to the hospital where we have spent a significant amount of time and money over the last 5 years. Tomorrow, Little Warrior will be NPO – no food or drink. Tomorrow, Little Warrior has scans, and an echocardiogram. Tomorrow, she’ll have a needle jammed in her arm, and will have to drink 3 cups of contrast. Tomorrow is the first time she’s gone a whole 6 months between scans. Tomorrow, our lives could completely change. Again.

Looking through her eyes: tomorrow, we’ll get up early and drive to where she’s had a lot of fun, and see people she really likes, like Dr. M. She’ll get to drink 3 cups of Sprite, and watch tv, and then she gets to go on the “donut ride,” that slides back and forth. She’ll get lots of praise, and stickers, and probably even a little toy, because she’s so good at doing things like being still and holding her breath. And when they put the iv in, she’ll get to show them how she doesn’t even flinch! Doesn’t even say “ow!” And then we’ll go get a real donut, and chocolate milk. And then she gets to lie in the dark and watch the Disney channel while someone slides something across her chest. And THEN, we get to go to the cancer clinic, and sometimes there’s art people there! Or musicians! And all the nurses will talk about how much she’s grown. And she’ll get to see Dr. M, who will want to know about how’s she’s been. She’s so excited, she’s planning on sleeping in her shoes.

Cancer Parents, this is for you. We have so much to worry about. But you maybe can mark “crush her spirit,” or “make him fearful,” or “traumatize them,” off your list. This is their journey. And hopefully, they look at it with different eyes than we do.

We are happy to report that Little Warrior is still NED!

Wigging Out

With St. Baldrick's season in full-swing, it's important to know where your hair donations are going. Dumbledore has just the facts, ma'am.

Why I Don't Support Locks of Love

Okay, I've been meaning to write this post for a couple of years, but it seems like someone has always just cut their hair and donated it to Locks of Love, and I really didn't want to offend anyone, or make them feel bad.

Buck up, Dumbledore. Tell 'em how you feel.

I love the idea of donating your hair to a charity. It's something so meaningful -- you're donating a part of yourself! And we girls, well, we've been raised on this notion. It's Della in Gift of the Magi and Jo in Little Women. It's putting someone else before your own vanity. It's lovely.

My problem with Locks of Love is that I think most people who donate are doing it under false assumptions:

a) Their hair will be used to make a wig
b) Their hair will be used to make a wig for a child with cancer
c) Their hair will be used to make a wig for a child with cancer, donating it to them for free

Now then:

a) Chances are good that your hair is either sold to a wigmaker or thrown away. (I read somewhere, but sorry, can't remember the source, that most American hair isn't good for wigs because we wash it all the time, use hairdryers, etc.)
b) The primary purpose of Locks of Love is children with alopecia. They donate their wigs to children with permanent hairloss, not the temporary loss caused by chemotherapy.
c) Not necessarily. For many, they are sold on a sliding-fee basis. One sends in an application, tax returns, medical diagnosis and two letters of recommendation.

Unlike some, I don't consider Locks of Love to be a scam. If you donated, you did a good thing. Children with alopecia deserve something that will make them feel more normal. (Although, maybe it's the Universalist in me, but I have an issue with requiring two letters of recommendation just for something to feel like you're a normal kid. But that's me.)

My problem is that there is a wide chasm between what people think Locks of Love does and the reality. Verisimilitude! This is one case where you can "blame the media" who don't even do the most basic investigation -- I mean, most of this information is on Locks of Love's own website. But the media continue to promote misinformation, such as in this article:

"...he and several members of their Unitarian congregation decided to grow their hair for Locks of Love. The nonprofit organization provides wigs for children who lose their hair during chemotherapy."

So, if you have long hair and you specifically want to help kids with cancer, what to do? Well, I have some answers.

1) Donate it to Wigs for Kids.
2) To donate it for an adult going through chemo, donate to Pantene's Beautiful Lengths.
3) Best yet: Sell it and donate the proceeds to CureSearch.

When Can I Get a Tattoo? The Peculiar Everydayness of Cancer

Dumbledore is back with more wisdom. And visions of ink.

It’s not Little Warrior that wants a tattoo. It's me, the mama.

I have somehow managed to make it 41 years without a single tat. I’ll be (finally) graduating from seminary in December. I want a tattoo!

(What, you think ministers are immune to the subtle temptation of ink?)

A bunch of my friends all went and got tattoos about three years ago. I wanted to wait til I graduated. A couple of months later, Little Warrior was diagnosed with a relapse. She wound up needing several infusions, but none of my friends could donate blood, because of the tattoos.

Now, it’s not the worry of needing to donate blood that holds me back. A) There was plenty of blood in the blood bank and B) They don’t let parents directly donate blood anyway.

Why? Well, that brings me to what’s holding me back on when I’m going to get a tattoo.

They don’t want parents of cancer kids doing direct donations because god-forbid, they may need to donate bone marrow or a kidney to their kid somewhere down the line. Apparently there’s a small but real risk that if they get your blood, their body might make antibodies, which would then attack the bone marrow or organ.

So, a seemingly simple decision – Do Ya Wanna Get a Tattoo? – is complicated by … You Want a Tattoo? But What If Something Awful Happens and You Need to Donate Sumpin’ to Yo’ Baby Within the Next Year?

Summarized as:

“Are you feeling lucky, punk?”

It’s not big. It’s not dramatic. We’re 2 years + past ending treatment. Life gets back to normal and silly things like tattoos become something you think about again.

It’s just an example of how cancer becomes this very mundane everyday thing affecting all aspects of our lives.