Friday, January 20, 2012

American Cancer Society Blog on Bald Barbie

I'm simply pasting the original blog post from American Cancer Society's blog. The apology was issued on the original blog post and the original post was erased. 


The apology and the childhood cancer community's reaction can be found here:
Bald Barbie Demand is an Over-Reach - UPDATED


This was Mr Becker's original blog post.

Bald Barbie Demand is an Over-Reach


You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who neeed it.

Thursday, January 12, 2012

"Baby needs a new pair of shoes!"

I have no idea where this will go. I never go back and edit my writing for content. I'm just going to let it flow and see where it takes me.

Support, statistics, advice......

HOW do you have these conversations with friends, family, new acquaintances? We are quickly coming up on our three year diagnosiversary. I feel like I have 'done' my big splashy Momcologist soap box stuff. I've networked like crazy, met some amazing people. Have developed relationships with many and have immediate connections with a handful. I've checked out the foundations, learned about the resources, can quote the facts and statistics like they were the birth dates of my children. I can talk about this experience with a steady voice and rattle off Gregory's timeline as if we were talking about a grocery list.

Then.
Someone very close to me has a niece diagnosed with cancer.

Then.
Three new JMML families enter my life within a week's time.

Then.
I'm watching. Witnessing. As a local Momcologist is saying Good Bye to her son.

Then.
I'm LIVING my life, with a SURVIVOR. Who, at this moment, is surviving and thriving. Who you would look at and NEVER know what he has been through.

On many occasions, it has been suggested that WE are the reason Gregory is doing as well as he is. I've even believed this, for quite awhile. Believed that the only reason Gregory is doing as well as he is, is because I took every single possible precaution I could. Protected that child up one side and down the other. I think I had to believe that. At least for awhile. I had to control something. Yes, the precautions we took certainly improved his chances. Yet......

Every single step is unknown. I'm not going to be able to put this into words that my heart is screaming to express. By saying/believing that what 'I' did is the reason Gregory is surviving there must also be a reverse thought. So..... my friends kid did not survive because 'SHE' did not do A, B & C? Chew on that for awhile.

My very dear friend, Susan Heard, Momma to David has this to say about it: "Science failed David."

Yes. Our science can only go so far.

How do you offer words of support to newly diagnosed families. I can only share our experience. I find myself using a lot of disclaimers along the way. Clarifying that we are not special. That we did not have a magic bullet. That we did not have 'the' doctors and treatment center. Trying to convey the fact that we did NOTHING special.

At this moment in time: WE ARE LUCKY. Plain and simple. I don't have secret wisdom to impart. I only have a heart that is open and willing to sit with yours. I have enough distance to be able to share our story, take yours in and lean into you. We still have a very long row to hoe. In this moment, I feel like we have a break. A time to take a breathe, survey our surroundings, enjoy the wellness of our family. This is not done without great respect for what is behind us and what we have yet to face. We are also acutely aware of the mysterious 'What ifs......"

I can only offer what I have in my toolbox. I have patience. I have experience. I have pragmatism. I have love. I don't have magic bullets. I don't have shortcuts. I don't even have band-aids. (I don't believe in them.) If you come to me, I will offer what I think you need. I will gently test your limits, checking where you are and how best I can serve. I will ALWAYS be truthful. Sometimes painfully so. I will NEVER sugar coat. I will NEVER offer false hope. Ever. I will ask you to SURRENDER. If we are not a good fit, you are under no obligation to continue a relationship with me. If we are a good fit, I will always be here for you.  Just because we both have kids with cancer.......... it does not always work. I will go with you to those dark places. I will hold your hand as we walk those terrifying paths. You will never be alone. Lonely? Probably. Alone? Never.

Crap shoot, folks. Childhood cancer is one big Crap Shoot. Don't ever forget that. You cannot pray enough, wish enough, find the right doctor, find the perfect treatment center, get into that one trial. Nothing is certain. No one is responsible. It's the luck of the draw. It's throwing the dice: "Baby needs a new pair of shoes!"

So freaking grateful we are currently holding a long straw.
~MindiTheMagnificent
Momcologist

PBS Share Your Photos: Childhood Cancer Awareness

The Greginator ~ Juvenile Myelomonocytic Leukemia
Diagnosed 2/25/09 ~ Bone Marrow Transplant 6/11/09
No Evidence of Disease ~ Surviving
www.mindithemagnificent.com 
This is for PBS' Share Your Photos: Childhood Cancer Awareness

Photos are also being grouped together on Pinterest.

Sunday, January 8, 2012

Listen To Your Mother SPOKANE Auditions!

ATTENTION SPOKANE WRITERS:
AUDITIONS

We seek Spokane writers to read their original essays on any aspect of motherhood in the second annual LISTEN TO YOUR MOTHER Spokane show at the Bing Crosby Theater on Mother’s Day, Sunday, May 13, 2012.

People of all ages, types and backgrounds and writers of all experience-levels are invited to audition.  Although mothers are welcome, you need not be a mother to audition.  We encourage diverse perspectives on the subject of mothers or mothering.

Auditions will be held on Saturday, February 25 by appointment only.

LISTEN TO YOUR MOTHER is a community-oriented celebration of the beauty, the heartbreak, the trials and triumphs that are MOTHERHOOD directed and produced in Spokane by local moms, writers, and bloggers Stacey Conner and Elise Raimi. No previous stage experience is necessary.  Bring your original, humorous, poignant, painful, joyful and soulful words on mothers or mothering.  Previously published work accepted as long as the author retains full rights or has express permission to read the work for this event.

Commitment for cast members includes two group read-throughs in April, a pre-performance run-through at the Bing Crosby Theater and one 7:00 p.m. performance on Mother’s Day.

To schedule a February 25 audition, email: listentoyourmotherspokane@gmail.com  Please include your name and your availability for an appointment.  (Please also email us with questions or if you are in need of encouragement!)

We would love to listen to your words.  Come and audition and help us to continue this Spokane Mother’s Day tradition.



Sunday, January 1, 2012

Compassion, Connection, Courage

It's the opening that is sticky. What words should fly off these fingers to hook you and make you want to finish reading the entry?

Writing through Gregory's diagnosis and first 18 months post transplant was easy-peasy. While it was all about my emotions, it was about my experience with Gregory. These days I want to write about ME. These days my 'me' is not entirely consumed with Gregory. There is nothing acute to report, no earth shattering late effects. Which means I shy away from sharing anything. I'm stuck in this place of wanting to rejoice in Gregory's sense of 'wellness' and not wanting to disrespect or down play what our new reality is. So........

I write all day long. In my head. Brilliant, well phrased entries. Full of thought provoking content. Though not a single one of them have an adequate opening. Stupid Virgo brain wants a beginning, a middle and an end.

This is the time of year when everyone feels a knee jerk reaction to reflect and resolve. I find it rather creepy. These things should be done daily. Nothing big. Nothing too heavily life changing. Yet, those small moments, daily, bring on a greater life to live. Not too long ago I heard about Brene' Brown. A dear friend loaned me one of her books and I just was not into it, at the time. I happened to catch one of her Ted videos and I was blown away.



I got kind of geeked out after watching this video. She is a researcher. Data, data, data. Totally up my alley. The concept of living Wholeheartedly and vulnerability. Basically it comes down to three words/concepts.
Compassion, Connection and Courage. These three words have been showing up in my life constantly since then. An awareness that YES..... these are the three words that I want to define my life.

Now that I have the essence, it's time to make some hardish choices and decide what I want in my daily life. What I want to invest time in. I have a loooooooong list of things I want to do. Yet, none of them are a goal. They will happen when synchronicity and providence happen at the same time. By continuing to live the three C's I am confident that things will fall into place. Yes, I will slip and slide. Yes, I will snap. Yes, unexpected events will continue to happen. The difference today? I have a strong personal/emotional foundation.

Now the mundane:

  • I started practicing Ashtanga Vinyasa Yoga in November. I am in love. More later, it deserves an entry all it's own.
  • Gregory starts speech therapy on Wednesday (January 4). While I know he really needs it, I will grieve the loss of his precious voice and pronunciation. 
  • AnnMarie received two Guinea Pigs for Christmas. *swoon* They are the bees knees and I can't decide if she enjoys them more than I do. They are a true family gift. Even Curtis, the 13 year old, turns to mush when he interacts with them. Which is more often than one would imagine.
  • I started my first custom, fitted sweater for myself. (Knitted, of course!)
  • We have had sporadic cases of Chicken Pox in our 'hood. Gregory's immune system is still not fully functional and this makes me twitchy. 
  • Gregory 'graduated' from physical therapy! 
  • Curtis made honor roll for his first quarter of middle school. 
  • AnnMarie and I have been *squeeing* together over Glee. Why is this significant? There is so much joy in that little show for she and I. Joy that I was not ready to let in. It's getting in. It is JOYFUL!
  • I'd really like to volunteer at our local American Childhood Cancer office, but this is just not looking like this is the year. Hopefully next year when Gregory is in school full time. 
  • I'd like to partner with someone who can help me develop and publish a planner/calendar for families with medically needy kids. Know anyone? Send them my way!
Day 1. Moi: 366/2012
Moi. 366/2012 ~ Day 1


I'm doing a photography project. One picture of me, everyday for 2012. If you know any way to do a nifty grid of images for this blog? I'd love the inside scoop.

I discovered an amazing little organization this week. They are called Peach's Neet Feet. Peach custom designs and hand paints shoes for kiddos with life threatening health conditions. Her creativity and heArtWork are drop dead gorgeous. There is no doubt that she breaths every ounce of love that she possess into those creations. Check 'em out. They are on FaceBook, too. She is always looking for someone to sponsor a pair or two of shoes for kiddos.






‎"Each night, when I go to sleep, I die. And the next morning, when I wake up, I am reborn." 
~Mahatma Gandhi


As always, from my heart to yours.....
MindiTheMagnificent
~Momcologist