Tag: pediatric cancer

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Cancer Can Suck It.

Five years ago today I stood over my daughter as she lay in a hospital bed. She had been admitted the night before primarily just to expedite an MRI because of some concerning symptoms and loss of developmental milestones over the previous few weeks.  She awoke early, around 5, groggy, and vomiting.  I changed her diaper and she said in a slurred voice, “Change your diaper, change your life,” something I had told her time and time again at diaper changes.  Moments later, she lost consciousness and was rushed through the halls of the hospital to a CT machine.  Within two minutes Dr. Kane, a PICU physician, came out and spoke the words we will never forget, “There is a mass in your daughter’s head.”

So very much has happened in the five years since that horrible, terrifying morning.  We immediately moved to Cancerville and our lives would never, ever be the same.  We lost our innocence, Mary Tyler Dad and I, with those words.  We lost a lightness and an insulation from tragedy that will never return.

Those losses would multiply over the years.  A valued job, gone.  Four miscarriages and the idea of making another baby together, gone.  A sense of control, false as it may be, gone.  A sister for Mary Tyler Son, gone. Donna, gone.

Fuck Cancer

Cancer took our innocence, our fertility, our daughter, so, yes, cancer, fuck you.

Cancer did not take our hope, our joy, our resolve.

Tomorrow, the charity we started during Donna’s nine day vigil, Donna’s Good Things, will host it’s first St. Baldrick’s shaving event. St. Baldrick’s is the largest private funder of pediatric cancer research in the world.  $20 million has been raised in the three months of 2012 alone.   The organizer of the event is a reader of Mary Tyler Mom who was so inspired by Donna’s life that she wanted to do something to demonstrate that inspiration.  This is one of the missions of our charity — to encourage others to do Good Things in Donna’s name, helping to fulfill the potential of a girl taken much too soon by cancer.

I have been running around like a ninny this morning, through the rain and storms, and pulling along a surprisingly game Mary Tyler Son to every stop.  I can think of no finer way of telling cancer to suck it than to finish preparing for an event that will raise over $60K for pediatric cancer research.  I can think of no finer way to honor our beautiful girl than to raise money for research that will benefit the 46 children that will be diagnosed today.  Sadly, none of our efforts will help the seven children who will die.

One child we may be able to help tomorrow is a young woman, just 16, who was in treatment for leukemia when Donna was in treatment.  She was always very kind to Donna, friendly, supportive, and a bright ray of sunshine.  Sadly, she has just relapsed and is in need of a bone marrow donor for a transplant. No one in her family or in the current national registry of bone marrow donors is a match.  Thanks to some quick thinking by our organizer, and the receptive and positive nature of the local Be the Match representative, tomorrow’s St. Baldrick’s event will also host a bone marrow drive for our friend.  Yes, cancer, you can suck it.

The many individuals who have made tomorrow’s event possible humble me deeply.  We have dozens of shavees coming to Chicago to shear their heads.  Each of them has raised $ and will, after tomorrow, be a visible method of raising awareness for pediatric cancer.  Shavees are coming from as close as next door (thanks, Neighbor!) and as far away as California, Michigan, Georgia, and Indiana. These individuals, many of them women, honor Donna and all children in treatment for cancer.   That is a lovely way of telling cancer to suck it.

Mohawk  A shavee.

I’m still learning how to balance grief and joy and life and sadness and wifing and mothering.  But even while learning, I am triumphing over cancer every day.  Cancer has taken much from me, but it has not taken away the hope I have, the joy I feel, the resolve to never let Donna be forgotten.  Cancer drives me to help those that will learn today that their beautiful child, the light of their lives, carries a diagnosis of such a beast of a disease.

Thank you to all of the individuals who have already ensured that tomorrow’s St. Baldrick’s event hosted by Donna’s Good Things will be a mad success — those who have offered their heads to be shorn, those who have  donated some top notch items for our silent auction, those who have used their words and blog platforms to raise awarenss, those who have opened their wallets to honor Donna, or another person affected by cancer, and to those who will swab their cheeks in the hope of being a match for someone in need of stem cells or bone marrow.

Together, collectively, in a barbaric yawp, we are telling cancer to suck it. That is the best way imaginable to honor Donna’s life, and as her Mom, I am inexpressibly grateful to you for the assist.

Donna in Pea Coat

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Happy Donna Day! It’s a Good Thing!

This is one of dozens of blog posts that will be published today, Valentine’s Day, to raise awareness for St. Baldrick’s, the largest private funder of research for pediatric cancer.  All of these posts honor Donna, Good Things inspired by her, and were written by some of the most amazing people I have the privilege to circle the sun with — Thank you, blogging community!

Donna on scooter 

Valentine’s Day sucks for a lot of people.  It makes us cranky.  When they’re good, they’re really, really good, but when they’re bad, oh man, they’re awful. Case in point:

Best Valentine’s Day Ever:  1994.  I was a young, single, dating gal on the make.  I had moved into my own apartment a year or two prior.  One of those awful four plus ones you find in Lakeview, an architectural blemish to the better buildings that surround them.  It was a studio with gray carpeting, a green refrigerator, and one window that looked into a light well.  But I loved it.  It was my small, stifling home and it had its charms.

I was newly dating a couple of young men and there was much promise in the air.  One was a handsome sound engineer/musician from Spain.  Barcelona. Barth-e-lona.  Need I say more?  The other was a tall Irish lad, broodish and angsty, with a day job and music aspirations as well.  I met the tall Irish boy (Irish American, Northwest side, yo) for lunch at a small Italian restaurant in Streeterville.  I took a cab and he was waiting for me at the table with a dozen red roses.  Swoon.  It was impossibly Breakfast at Tiffany’s.  He always made me feel like Audrey Hepburn.

After lunch I returned to the office and contemplated my evening date with the Spaniard.  He was much less Tiffany’s and much more Salvation Army, but no less appealing to me.  He met me at my apartment with, what else, but a dozen red roses.  He spied the other dozen on my table and hesistated but a moment before handing them to me.

Girl, you know I was feeling powerful that day.  Cupid had nothing on me.

Worst Valentine’s Day Ever:  1995.  Still young, still single, not dating much at all.  I had it bad for another musician.  Really bad.  Like puppy love on steroids bad.  He was involved in a serious relationship, but that didn’t stop him from making out with me in the file storage room of the law firm we worked at every chance we got.  Another musician with a day job.  Yes, I had a type.  Sigh.

We went to lunch at the Carousel Cafe, an old hole-in-the-wall diner on State Street.  As usual, our banter was lovely and flirtatious.  Not so usual was my admission that I loved him.  “I think you should know that I love you,” I offered timidly, sheepishly.  Yeah.  I think  he said something like, “Thank you,” in reply.  Kiss of death, of course.  I rode the bus home that night, sitting in the corner of the 36 Broadway not so silently weeping.  I get really, really ugly when I cry.  My nose and eyes pink up like an albino reindeer. Splotchy does nothing for me.

Worse yet was that when I finally made it home, to the comfort of that same stifling studio, there was a knock at the door.  I knew instinctively it was the guy from downstairs that was crushing on me and must have watched me walk in. I simply could not deal and that poor guy on the other side of the door knowing I was inside only made me feel worse than I already did.  I sucked in that moment.

Cupid had me by the throat that day.

So what’s my point?  And what does any of this have to do with Donna, or her Good Things?

Swinging on Swing 

My point is, that life goes on.  It gets better, and then it gets worse again. And then it gets better, only to nosedive into sorrow.  Valentine’s Day is the perfect day to reflect on the highs and lows of our lives.

I grew up.  I met the man of my dreams — better yet, I married him. Seriously.  I am married to the best human being I know.  That’s pretty cool.  But still, things happen.  You fall in love, you marry, you make babies, and those babies are diagnosed with cancer.  And die.

This is life, people.  In a nutshell.  It is hard and cruel and beautiful and wondrous.  Sometimes, all at the same time.

When Donna died Mary Tyler Dad and I resolved to start a charity in her name. Slowly, that charity took shape and form and is now an honest to goodness 501(c)(3).  Donna’s Good Things was created to provide joyful opportunities for kids in tough situations — moments of joy that would connect that child to the idea of possibility — that life sucks some of the time — a lot of the time for many, but that life is also a beautiful privilege.  We work hard to create Good Things for kids that lack them.  We work hard to encourage other folks to do Good Things.  For us, it is how we parent Donna now, and it is a means to fulfill her potential that cancer snuffed out too damn soon.

I wrote about Donna every day of September for Childhood Cancer Awareness Month.  In the midst of that month, one woman found Donna’s story and was so moved that she wanted to do a Good Thing to honor her. She had an idea to raise $ for St. Baldrick’s, the largest private funder of pediatric cancer research, $120 million and counting.  This woman wrote to me and asked for my support.  She wanted to shave her head and thought she could raise $5,000 to do it — would I help her?

Um, yes, why yes I would.

On Saturday, March 24, 2012, Donna’s Good Things is sponsoring a shaving event at Candlelite Chicago, where we will raise not $5,000,  but $20,000.  $20K-in-a-day is what I am calling it now.  One woman with a wish to honor a girl she has never met has inspired 32 others to shave alongside her that day. And that lofty $20K?  I think we’re gonna smash through that goal. I do.  But we need your help.

An anonymous donor, a great supporter of Donna’s Good Things, is offering a matching campaign from today until Saturday, February 18.  All donations to our St. Baldrick’s event will be matched up to $2,000.  Your $5 becomes $10 and that $10 becomes $20.  Or, you know, your $100 becomes $200. See how that works?

Doing Good Things does not bring Donna back to us.  We will never tickle her ear again or make her pancakes or walk her down the aisle or hold her babies.  None of that.  But we do wake up every day.  And we do care for Mary Tyler Son.  And we do need to figure out a way to live our lives with joy amidst the sorrow.  Supporting kids who need our help is one way. Nurturing the efforts of someone touched by Donna’s story is another way. It gives us purpose and hope and reminds us that once we cared for a beautiful little girl who had enormous ability to teach us about life and joy and wonder and beauty.

There are more kids like Donna right now, slogging through outdated cancer treatments.  There are others, most not even born, who will someday get a pediatric cancer diagnosis.  They will suffer and persevere and live and die. They need better treatments than Donna had.  You can help with a donation to the Donna’s Good Things event, or by creating your own shaving event, or introducing your hair to a razor while you raise $ for these kids through St. Baldrick’s.

This event is the latest of our Good Things and we are most grateful to the reader, one woman, who asked for help.  She has reminded me again, like Donna, that ordinary people are capable of extraordinary things.

Make a donation.  It’s a Good Thing.  Think about Donna and all she has to teach us, still.  Tell the people you love how you feel about them, because even if it results in you crying inthe corner of a bus on the way home to your empty apartment, there are better days ahead.  For you, for me, for kids with cancer and those who love them.

Happy Valentine’s Day, Happy Donna Day!  Now make that donation before you turn off your computer.  Now.  Not later.  Please and thank you.

Wonder Donna 

 

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Social Media 101: My Barbie Mea Culpa

Five days ago I wrote a post about the bald Barbie facebook page that had been crossing my feed quite a bit in the two weeks prior to that.  As the mom of a girl who died of cancer, lots of folks assumed I would be interested. That was a safe assumption.  Receiving those posts from friends and readers didn’t annoy me — it was clear that folks thought I would appreciate the idea.

What did annoy me was the idea itself.  Barbie is an icon of unattainable and unhealthy ideals of beauty and she becoming a plastic symbol now preaching acceptance of young girls like my daughter made my stomach turn.  YES, children with cancer need acceptance and support, but I stand firm that they need research more.  Dolls are great and can be therapeutic.  I get it.  But one in five of the girls diagnosed with cancer will die.  Their parents and families will forever mourn their passing.  Much in the same way that plastic Barbie  dolls will forever clog our landfills.

So I wrote about it.  Sitting in my pajamas, click clacking away on my lap top, Mary Tyler Son blessedly occupied with new Christmas and birthday gifts, I wrote about it.  Me, a computer, a sofa.

I opted to use an image in the post that is the facebook avatar of one of the groups promoting the idea of the bald Barbie — there were several groups when I wrote the post.  Within an hour or so, the administrator of the page somehow became alerted to my blog and wrote several comments.  Her tone was respectful, though her arguments, in my humble estimation, were weak.  At the time of my post, the page had approximately 5K facebook likes.  There was some excitement on Day 1, as the administrator of the page linked to it on her bald Barbie page, calling it “negative” and “against our cause.”

Early on Day 2, I heard from a childhood friend, a local news anchor, that my Barbie v. Cancer post had been picked up by Jeff Crilley’s Rundown. What’s Jeff Crilley’s Rundown, you ask?  Yeah, I had to Google it, too.   Apparently, Jeff Crilley is a pretty powerful guy.  Another friend referred to him as the “Faith Popcorn of trending and emerging topics.”

Crilley runs a PR shop, all journalists, all the time.  He publishes a daily “Rundown,” a subscription service that offers story suggestions for journalists around the country of trending topics.  Mr. Crilley, somehow, probably because of the healthy traffic that was generated, listed my Barbie v. Cancer post as a story to watch and cover.

By Tuesday night, several small media outlets around the country started running stories about the call for a bald Barbie to raise acceptance for girls with cancer and other illnesses that result in hair loss.  One gal (I can’t bring myself to call her a journalist) in Salt Lake City identified me as the “leader of the anti-bald Barbie movement.”  Really? Huh.  A movement?  And here I thought it was just me in my jammies on the living room sofa expressing an opinion.

Tuesday night is when things started getting heated.  More stories started appearing.  All referenced the bald Barbie facebook page that I had featured.  Their numbers started exploding.  The bald Barbie pages I did not feature saw no change.  Flatline.  Threads on the featured page became so heated that folks championing “the cause,” as it is so ridiculously referred to, started advocating that folks who disagreed with the manufacture and marketing of a bald Barbie should be shot.  Wow.  Yeah, that is when I promised Mary Tyler Dad I would make my exit from visiting that page anymore.

By Wednesday, Day 3, bald Barbie was national news.  God bless the Huffington Post who ran a story where I was referenced as Mary Tyler Mom with a link, rather than “one blogger.”  As Tuesday’s stories made minimal reference to there being an opposing view to the bald Barbie, I started to see the irony of the situation.  Here I was — one mom, one lap top, one pair of pajamas, one sofa — influencing national news.  And with kind of, sort of the opposite effect I was hoping for (though I love all the discussion of pediatric cancer, even if it is sanitized and romanticized).  Oops.

Turns out, America loves herself a Barbie.  Even a bald one.  The bald Barbie facebook page I featured now has over 110K likes.  In four days. Posted by one of their administrators a couple of hours ago:

Okay I am trying not to slam people’s facebook pages with clutter. However, we have been getting complaints about people’s posts. I will say this we love our supporters and hope our growth can keep up. However we grew to over 111,000 in 4 days! We all have families, and some full time jobs. We are not able to catch everything immediately. If someone is completely rude and ridiculous hit the reportbutton to Facebook. Please just contact us if we do not see it. In the last 4 days we have had many media requests internationally and nationally. So it has been very overwhelming to us all how fast this has grown. This has been a more than full time job for all the administrators involved, so please be patient with our growing pains. Thank you for your patience.

As I feared, the original intent of the bald Barbie — raising awareness for childhood cancer and other illnesses that result in girls losing their hair — has been swallowed by the pink breast cancer movement.  Many of the folks responding to this idea, and they are now all over the world, are women who have been affected by breast cancer.  Many more are calling for proceeds to be donated to the Susan G. Komen (I would add “for the cure”, but I’m pretty certain they would slap a lawsuit on my ass if I did that, so I won’t) foundation. I had a hunch that would happen when I first posted on Monday and it brings me no pleasure.

So, you’re welcome, bald Barbie “cause.”  I did you a solid.  And I learned a lesson.  One mom with a laptop and an opinion is a mighty powerful force. Word.