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.

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    I think you should challenge that guy to read the installment Transplant part 1 or 2. If he's still indifferent after that then...well I guess I don't want to criticize someone I don't know - who knows what motivates people these days, its just hard for me to imagine not wanting to do something after reading those parts of the story. The other day I was online looking at Rally Foundation - they also raise money for childrens cancer research. You can look at the different Rally kids online to pick one to run in honor/memory of. I clicked on a picture of a little boy - no more than a toddler - and in the description it said he had gone through 3 rounds of chemo and 3 stem cell transplants, and my jaw kind of dropped because I know what that means now. Before I read about Donna I was like you. I would see the stories and I would be sad but I wouldn't think much more about it beyond that, but now I know what it means and it makes me want to DO something. It doesn't just make me sad, it makes me mad too and makes me want to do something. So I keep sharing Donna's story .

  • In reply to Jessica Chase Avila:

    Jessica, you are the POSTER CHILD of what I was thinking about when I wrote this. You brought Donna and all children with cancr into your consciousness after you read her story. With that knowledge, you have gone on to DO some amazing things on behalf of children with cancer and their families, me included.

    For those who want to know what is possible, Jessica ran in a 10K race that raised $ for cancer research this May for a Donna's Good Things team organized by another reader and supporter. You see how that works? Well, that wasn't enough for Jessica, so this month she organized a 'virtual' 5K to benefit DGT, netting almost 1K in the process. Amazing. There is a waterfall effect of Good Things, which is what we always hoped for . . .

    You inspire me. MTM.

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    I read Donna's story in like 2 days. I could not stop. I was completely wrapped up in it as if it were happening to me. I'm a cancer researcher and am astonished that so few dollars go to pediatric cancer! It's irresponsible of the government and agencies like the ACS to promote their "causes" with innocent (not to mention, suffering) children only to give that monies elsewhere. Donna's story is a must-read if you want to remember what life is really about and how to make the most of each day. RIP Donna - you're parents have honored you greatly.

  • Mary Tyler Mom - I am captivated by your post. But the link at the end of day 18 - Relapse 3.0 - seems to be broken. I don't know how to continue with the story? Please help and God Bless you, Mary Tyler Dad, and Mary Tyler Son for all you have been through and for sharing your journey.

  • In reply to sklanders:

    The same thing happened to me...18, 19, and I think 20 are like that. Google "Donna's cancer story 18" etc. and you should be able to pick up each link that way. After 20, it begins working again.

  • NVM - found it using search. Amazing how much you were willing to share of your personal experience. I feel like you are a dear friend.

  • Mary Tyler Mom, I read all of these last summer, a month after having my son. I just could not imagine what I would do if my son were to be diagnosed. So with that thought, I started donating to St. Jude's Hospital. A payment comes out monthly right from my debit card. I wish so badly that I could do more. And when I can, I most certainly will. Cancer children hold a very special place in my heart and that's all because of Donna's Story. Thank you so much for sharing and making me so aware.
    Love, Johanna

  • Mary Tyler Mom, I came across the story of your daughter Donna (my name is also Donna, and I have found with such a rare name all my life that I just instinctively love Donna's) through another blog, Rockstar Ronan, and I know sorry's don't cut it, nor words of sympathy. If I was with you in person, I would give you that hug without words that is said to convey what you shouldn't attempt to say to someone who has lost there child, but since I can't do that, I'll just say that it was wonderful that you were able to capture so many lovely pictures of that darling little girl.

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