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

sand

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: Choosing Hope

This is the thirtieth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of treatment.

Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what’s happening with your treatment.  Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates.  Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen.  Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody.  Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer.  Some will live in Scarred Acres the rest of their lives.

Our family knew the move to Grieving Heights was on the horizon, but we weren’t ready to pack just yet.  There was a beautiful surrealness to this month.  It felt normal.  Normal is something you crave when you live in Cancerville.  I was doing dishes one day, one of the chores I had missed with all our supportive family around to take care of the details, when I was rinsing out an empty ice tea bottle.  I unscrewed the cap and noticed words on its underside:  “Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.”  (Martin Luther)

It’s crazy how the words on a discarded bottle cap can change your life, but these did mine.  That they were spoken by the architect of the Protestant Reformation is simply ironic bonus.  They stuck with me for days, Luther’s words, popping in and out of the precious moments with Donna spent doing the most mundane things.  An ordinary life, full of park visits, and naps, and errands, and simple dinners was a haven to us.  Every single thing in those days felt innordinately brillaint and beautiful and fleeting.

As the words marinated in my thoughts, I began to see the connection between them and our mantra throughout treatment to ‘choose hope.’  I wrote about it at the time:

“When all of this began so long ago and I first typed the  words ‘choose hope,’ my guess is that most folks assumed the hope was for Donna’s cure.  If I’m honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? 

As much as I hoped for a healthy Donna, there were other things I hoped, and still hope for.  Hope to get through the day.  Hope that there will be another day with Donna.  Hope to find the joy in life.  Hope to not become bitter or angry.

Hope to find a way to live with the cancer in our lives without it overtaking our lives.  Hope to adopt a child, knowing that Donna would not be able to carry one herself due to treatment and to provide her with the knowledge that familes are made in all different ways.  Hope that when Donna was uncomfortable or in pain, that it would be transitory and she would bounce back.  Hope that [Mary Tyler Dad] and I would remain strong together. 

Hope that Donna would find the world a lovely, beautiful, wondrous place – – a place she wanted to stick around in.  Hope that the docs would stumble upon something that somehow hadn’t cured the kids that had come and gone before Donna.  Hope that our lives would find their way back to normal, even if that looked different.  Hope that if Donna did die, [Mary Tyler Dad] and I would somehow survive.  Hope that [Mary Tyler Son] would not be burdened by our grief.  Hope that joy will always be with us.  Hope that we will not be alone. 

The hopes change and continue to evolve, as they should.  At the base of all of them, though, is that we, this family, whatever that may look like, will somehow survive.  Some of the choices we’ve made along the way have pointed to this.  Buying the larger home two years ago; pursuing the fancy pants pre-school for Donna, a place we felt could nurture her smarts and spunk; welcoming [Mary Tyler Son], or ‘Little Fatty Chumpkin,’ as Miss D calls him; enrolling Donna in dance class and pursuing it despite relapse after relapse after relapse. 

These have all been choices, conscious and deliberate choices, made in the face of cancer. These are our apple trees.  And my latest hope is that these trees will sustain us when our world does go to pieces.  That these trees will feed us and shade us and shelter us from the inevitable storms that will be.”

Stylish Donna 

In that vein, as Donna’s most desired apple tree, we sent her to pre-school.  More than any other thing, Donna wanted to go to school.  Good Lord, if there was ever a child that walked this earth that was built for school, it was Donna.  Mary Tyler Dad and I plotted and fretted and steeled ourselves for how the staff that had so hopefully accepted Donna the previous winter would react to our decision.

Turns out, with loving and open arms.  We met with Donna’s three teachers and the school RN and the Admission Director and devised a plan.  We discussed how other children might react and concerns their parents might have.  We came to the meeting holding a letter from Dr. Stew, explaining why Donna physiologically was not able to be toilet trained (Stew would have done anything for Donna, even enable her with the one place she could and did exert her control.  “I am too young to sit on a toilet,” she told us time and time again.)

Donna painting

It’s hard to grasp and capture the suspended nature of those weeks Donna was in school.  I felt like such a Mom.  A happy mom, a loving mom, a busy mom, a SAHM.  The reason why I was staying at home was immaterial.  For those brief weeks of Donna thriving despite the beast growing inside her, having its way with her under our helpless watch, I got to be the mother of two.  I took Cancer Mom’s cape off and got to be simply, Mom. 

In these days, our neighbors, Chabad Lubavitch Jews, encouraged us to travel to Queens, New York with Donna, where the leader of the Hasidic movement was buried.  They believed that his burial place had healing powers and thousands travelled there daily and were cured from illnesses as critical as Donna’s.  If we were not to travel, they encouraged us to send a prayer via email and it would be placed at the Rebbe’s grave. 

We are not religious, Mary Tyler Dad and I, but I embrace the belief that no one truly knows what is and is not in our world, or what happens after we leave this world.  Each day as Donna would nap, I would type the same message to the Rebbe and think about it as it made it’s way to Queens, was printed, folded, and placed next to the Rebbe’s grave:  “May she live until she die.”  That was my wish for Donna.  I did not ask for her healing or a postponement of her inevitable death, I humbly asked the Universe to allow Donna to live until she died.  No suffering.  No pain.  No lingering.  May she live until she die, was my mother’s plea, my last wish for my dying daughter. 

Mama Hugging Donna

Tomorrow:  The End