Donna’s Cancer Story: Why You Should Share It

Today is Childhood Cancer Awareness Day, smack dab in the middle of Childhood Cancer Awareness Month. 

Not writing this year, I feel a little bit like I’m sitting here twiddling my thumbs, waiting.  But what am I waiting for?  What do I expect to happen?  I don’t know honestly.  Is it Matt Lauer calling to want to interview me?  Nah, but that would be nice.  Is it Oprah, having suddenly seen the light that pediatric cancer is a worthwhile topic?  Nope, that’s not it.  I think it’s you I might be waiting for — yes, YOU. 

Raising awareness for a pediatric cancer needs to be a grassroots effort.  That means you and me and you and you and you and you and you and you and you, there in the back, yeah, you, too.  The thirty six children that will be diagnosed today need better options for their care.  They need options that will not only allow them to survive, but allow them not to be scarred by their treatments.  They need treatments that will not result in them requiring hormone replacement therapy to grow or hearing aids to hear or surrogates to carry the babies their bodies can no longer grow, as their reproductive organs have been trashed by the toxic cures available to them. 

One in 300 children will be diagnosed with cancer by the time they turn 20 year old.   Did you know that? 

Before Donna was diagnosed, I was probably a lot like you.  I had heard of children with cancer, but didn’t know any.  I felt badly for the kids in the St. Jude’s advertisements in movie theatres, but those kids were forgotten by the time film rolled.  And you know what?  That’s life.  We are busy and stressed and pulled in a thousand different directions.  These days, I am pulled in a lot fewer directions.  Cancer clarifies a lot of things.  It shows you what is important and who is important.  It puts you in touch with an inner strength that you never thought possible.  I wrote earlier this week that I am more focused — laser focused. 

Having buried Donna, knowing that she will never come back, that no treatment will ever bring her back to us, I feel for the kids still in the game and those that have a spot waiting for them.  They’re warming the bench now, but that errant cell is inside them, tick, tick, ticking, waiting for it’s opportunity to reproduce and reproduce and reproduce, resulting in cancer.  That child could be yours.  That child could be mine.  I shudder at that thought.

The U.S. government devotes approximately $5 billion a year to cancer research.  4% of that goes to pediatric cancer research.  We have not yet won the War on Cancer, declared by President Nixon in 1971, when I was a wee girl of two.  The American Cancer Society (loathed by Cancer Parents everywhere) does so little for pediatric cancer it is pathetic.  One-half penny of every dollar donated to ACS funds pediatric cancer research.  I will guarantee you, though, that their fundraising pitches include TONS of images of children.  Yuck.  ACS can suck it just like cancer can.

At the end of the series I will run a piece about what folks can do to help, but for right now, I need you to do something else.

I need you to share Donna’s Cancer Story.  When I wrote it last year, my intent was very strategic.  I firmly believed, and still do, that if people came to know and love a child with cancer, they could not help but become better aware and involved.  I know that because it is what happened to me.  Were it not for Donna, I would still be that gal welling up at the bald children, then blithely going about her busy day.  Be better than me.  I need you to be better than me.

Last week a personal facebook friend shared Donna’s Cancer Story in her news feed.  It was prefaced by some moving and inspiring words of hers about how since she read it last year, pediatric cancer has struck closer to home, more than once.  One of her friends wrote on the thread, “I don’t need to read more inspirational stories to know that the struggle with cancer is significant and painful.”  Ouch.  Damn that hurt like a kick to my stomach.  I wrote back, as did my friend, chiding him.  Her friend responded, “I feel for your friend and sympathize with your situation. A lot of people post much more ‘here’s an inspirational story for you’ material that I find trite.” 

I challenged this stranger to read Donna’s Cancer Story, to commit to reading it for ten minutes a day for the 31 days, and that if it did not move him, if he did not feel changed by coming to know Donna and her lessons, I would gladly donate $25 to the charity of his choice.  A couple of days later, this man private messaged me.  Here is what he wrote, “Ok. I read it. And it is moving, as I expected it to be. But it is also the first of 30 (!) pieces, and I simply do not have the time to read them all. I’m sure inspirational stories have their place, but they do seem to take over FB at times. Your work with families is valuable. Keep it up.”

Ouch.  Again, ouch. 

That exchange might seem like a reason NOT to share Donna’s Cancer Story, but I think it is the opposite.  His reaction fuels me and my advocacy.  I have heard from too many of you over the past year who found me and my writing through Donna.  I have literally hundreds of testimonials from folks whose lives have been changed for the better because of the time and emotion they spent reading it.  Reading about Donna enables you to know Donna.  Knowing Donna enables you to know cancer and the role it plays with families.  That knowing has translated into DOING by hundreds more of you. 

In March, Donna’s Good Things, our charity, sponsored a St. Baldrick’s shaving event.  This was conceived and organized by one of you, a reader, now doer.  That event raised over $77K for St. Baldrick’s, the leading funder of pediatric cancer research after the US government.  We had dozens and dozens of shavees — many women much braver than myself.  Some traveled to Chicago from Indianapolis, Atlanta, Michigan, and California.  Doers, all of them.  One of those shavees, a brave writer, wrote about her experience here.  She is definitely a doer.  I heart doers.

Now those examples are pretty extraordinary.  And both time and $ heavy.  But there are so many things you can do to raise awareness for pediatric cancer.  One easy thing is sharing Donna’s story.  Challenge your network to read about a little girl who is still making Good Things happen, three years after her death.  The awareness leads to understanding and many times that understanding leads to doing. 

Donna can no longer tell her story.  As her mother, I can and must.  Please help me do that.  Share.  Be a doer.  I will heart you forever.

Donna’s Cancer Story: One Year Later

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I feel a little bit like I am walking on air this September, weightless, unanchored.

For the first time since 2006, I am neither living through nor writing about our time in Cancerville.  This year I am simply cutting and pasting.  Literally, cutting and pasting, moving the daily installments of Donna’s Cancer Story from this site onto the Huffington Post operating system.  This makes me grateful, relieved, able to expand my lungs in full breaths.

Cancer is a badass bastard.  And once you move to Cancerville, you never leave.  Your subdivison changes, but you never leave this place.  Since 2009, Mary Tyler Dad and I have lived in Grieving Heights, the subdivision everyone fears the most.  The resale values in Grieving Heights suck, as no one wants to buy there.

This year, with a little distance and minus the pressure of writing every day, I feel grateful to be grieving rather than terrorized by some of the day-to-day realities in Cancerville.  Many grieving parents might disagree with me wholeheartedly and I know some that would give anything, anything, for another hug or moment with their child.  The terror of living through Donna’s cancer was at times almost physically impossible to bear.  It would send me into a dark corner of my home, Donna and her Daddy playing somewhere else, he much more able to be with Donna in the dark times.  I would grab the phone and call either my father or my sister.  I would wail.  I would rock back and forth, trying to soothe the intense fear I felt, the terror, really, which is fear’s evil twin.

The grief I feel now, I manage with more ease.  I see grief as the endless landscape of the rest of my life.  I will always live in grief, it will never go away.  Donna’s Daddy will always live in grief, too.  Gratefully, we are there together.  His sadness mirrors my sadness and vice versa.  Sometimes I feel guilty for thinking that, let alone writing, that, in effect, acknowledging that living without Donna is easier than living with the thought of losing Donna.

Does that make any sense?  Am I a horrible person, cold and numb in my grief?

Three years ago we were nearing that last month of Donna’s life.  In the end of September 2009, she started to show signs of tumor progression.  Tilting her head to one side, her left arm weakening.  We could no longer ignore what would be imminent — our daughter’s certain death.  But still, she went to pre-school two mornings a week.  I drove her there, gym shoes on my feet, Mary Tyler Son in the car seat next to her, his stroller in the trunk.  The five weeks that Donna was in pre-school were some of the happiest of my life.  For three of those weeks, six days, I got to feel like a MOM.  Like a run ‘o the mill, harried housewife.  It was bliss.  True bliss.  I feel grateful every day for those weeks.

Two weeks ago, Mary Tyler Son started at the same pre-school.  Today is his sixth day.  He is so very happy there, just like his sister.

The process of writing Donna’s Cancer Story was intense.  Intense.  For the first ten days or so last September, I would, at some point over the course of the day, read thirty days worth of Donna’s CaringBridge journal.  Mary Tyler Dad and I were prolific.  In the absence of a religious or school community to rely upon, CaringBridge became our virtual temple, church, mosque.  For many periods, we would write almost daily updates, often late at night.  So I would read thirty days of that.  Then I would pour through thirty days of photographs from the same month to cherry pick two, three, or four to supplement the words I had yet to write.

Usually late, around 8:30 or 9 PM, I would sit down to write.  On some days, usually the ones I was working, I would not have had the opportunity to read through CaringBridge or sift through photographs until this time.  Each post took about 2-3 hours of reading and photo selection, then 1-3 hours of writing.  That was approximately 3-6 hours a day.  Every day.  By mid-September, I had lost the ability to stay up past 10 or 11.  I would read and photo select before bed, then rise early to write, on work days, that would be rising about 4 AM.  By the end of the month, that last week of September, all bets were off.  That’s when I stopped being able to get up early or stay awake late.  The last few posts weren’t complete until 3, 4, or 5 in the afternoon.  Last September nearly done me in.

All of this was possible because I am married to a gem.  A true gem.  Mary Tyler Dad supported my efforts, though no doubt, they were wrenching for him, too.  While he wasn’t reading the CaringBridge or looking through photos, he was reading my posts, and holding me in my tearful exhaustion, and both mothering and fathering our son.  I thank my lucky stars every day that I found him and that he found me and that we both recognized one another.

So a year later, Donna’s Cancer Story is not the wrenching labor it was last September.  The actual posting is more of a task, a technical chore, than an emotional odyssey.  I am not the wrung out dish rag I was last September.

This year, I feel focused.  Laser focused.  I am more aware and receptive to the stories strangers send me about their responses to Donna’s Cancer Story.  I have space to both hear and feel what Donna has meant to you.  I am grateful, so very grateful.  I am angry at the shameful lack of funding for pediatric cancer research.  I am sad for the forty-six families that today will learn their child has cancer.  I am devastated for the seven American families that will lose their child today.  I am proud, both of my writing and ability to bring people to Donna’s story, ensuring she will not be forgotten, at least not right now, and of Donna herself.  I am so completely proud of my girl.  She remains amazing, three years after her death, and you all see what we saw and were privileged to nurture and bask in — Donna’s wisdom, her wonder, her joy.

And our family is doing okay, good enough as they say.  At Donna’s memorial service I talked about our need to ‘figure it out,’ our life without Donna.  We are doing that.  Mary Tyler Son ensures that every day of his life.  We are not what we were, what we could and should have been, but we are what we are — a loving, grieving family, incomplete, but figuring it out.

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Profound thanks for witnessing our girl, our sadness, our loss.  Thank you. 

 

Donna’s Cancer Story: Mary Tyler Mom Live and In Person!

On Monday, October 3 at 1 p.m. CST, I will host a live chat to discuss Donna’s Cancer Story. Those of you who have been with me for a while know just how deep my technophobia runs, so this is kind of a big deal for me.

Since the series has started, the support I have felt from readers has been wide and generous. Almost unfailingly supportive.   There are Cancer Parents reading, and young moms, and old moms, and Moms Who Drink and Swear, and dads, and Dads raging battle against Autism, and folks who are simply imagining what it must be like to care for a child with cancer.

As I say to my manager at ChicagoNow on a very regular basis, “I think it’s working.” It being a greater understanding of pediatric cancer as well as folks coming to embrace all the wisdom Donna has to share with us.

With September being Childhood Cancer Awareness Month, I could have used Mary Tyler Mom as a platform to discuss stats and numbers about cancer in kids — those alone are mind numbing — but I thought it was more powerful to tell the story of a child, my child, my Donna, and her cancer. If you come to know Donna, you come to know pediatric cancer.

Please join me Monday afternoon at 1pm CST. I will address questions about Donna, pediatric cancer, our experiences, Donna’s Good Things, and what it means to ‘choose hope.’  I will give each and every last one of you a huge kiss of gratitude for holding me up this month and spreading the word.

I might even be persuaded to talk about Gwyneth Paltrow.  Bring it, readers.

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