Donna Day 2013: Bloggers Unite

The saying is that March comes in like a lion and out like a lamb.  Donna Day 2013 proved that right.  There were 50 bloggers ROARING loudly about pediatric cancer and St. Baldrick’s yesterday.  One blogger’s voice and keyboard can be a powerful tool, but 50 collective voices and keyboards?  I think Walt Whitman said it best with the words “barbaric yawp.”  Thing is, though, that this March is gonna go out with a big ROAR, too, as the Donna’s Good Thing’s St. Baldrick’s shave will wrap up the month on March 30.  I am still reeling from the outpouring of love, support, stories, words, and blog posts from the participating bloggers.

From the bottom of my bursting heart, THANK YOU to all those who so willingly used their platform to talk about the not always popular topic of childhood cancer.  You are making a difference.

Without further ado, here they are . . .

Adventures of NinjaMama, “To Mary Tyler Mom, With Love”

Advice From Marta, “Cancer Sucks”

The Amazing, Affordable Adventures of Mama, Bunny and Pip, “Donna Day”

The Apocalyptic Ginger Chronicles, “Donna Day 2013”

Baby Sideburns, “Are You Kidding Me, Another Damn Holiday?  Oh Wait, It’s a Good One”

Cheaper Than Therapy,  “Donna’s Good Things:  St. Baldrick’s Event to Help Fight Childhood Cancer”

A City Mom, “It’s ‘Donna Day’ at ChicagoNow

The Crumb Diaries, “Curveballs:  Donna Day March 1, 2013”

Daddy Knows Less, “Feeling Blessed on #DonnaDay”

DeBie Hive, “Donna Day”

Deepest Worth, “Donna Day”

Dribbles and Grits, “Donna’s Day”

From the Bungalow, “Donna Day 2013:  Hair Grows Back”

Frugalista Blog, “Donna Day”

Get Fit Chicago, “If You Give a Runner a Tutu . . .”

Gig Masters, “Fundraiser for Kid’s Cancer”

Holy Fire, Cake Girl!, “Donna’s Day:  A Chance to Help Kids With Cancer”

Humble Writes Words, “It’s Donna Day!”

I Want a Dumpster Baby, “Choose Hope”

I’d Give You the Moon and Stars, “Donna’s Day”

Insane in the Mom Brain, “Donna Day!!!”

It Builds Character, “Donna Day:  Save Children’s Lives with St. Baldrick’s”

It’s Cool To Be OCD, “Donna Day”

Just Getting Started, “Support St. Baldrick’s and Donna’s Good Things”

Kissing the Frog, “Cancer Sucks, But We Can Do Good Things”

Shawn Renee Lent, “A Brain Tumor at My Dance Ricitle

Life As I See It, “Suck It, Cancer.  It’s Donna Day!”

Listing Toward Forty:  “Donna Day:  Support Pediatric Cancer Research”

Mary Tyler Mom, “Donna Day is Here!  Hooray!”

Moms Who Drink and Swear, “Sources Say It’s Donna Day:  The Facts About Getting the Facts Straight When It Comes to Funding For Pediatric Cancer Research”

Mother Naked, “Donna Day”

My Children Think I’m Perfect, “McTip’s Snips”

My Sports Complex, “Donna Day:  Playing in the Sand With Donna Lu”

Organized People Are Just Too Lazy to Look for Stuff, “It’s Donna Day!”

Part Time, “Spending Some Time With Donna to Beat Childhood Cancer”

Pinwheels and Poppies, “Donna Day 2013.  Let’s Do This”

Portrait of an Adoption, “Donna Day:  Raising Money for Pediatric Cancer Research In Memory of a Lovely Girl”

Razorblade Brain, “Change for Change”

Real Mom Nutrition, “It’s Donna Day”

Red Vines and Red Wine, “Celebrate Donna Day 2013 With Me!”

Ashbey Riley, “Celebrating Donna Day”

SarcasMom, “Donna Day Should be EVERY Day”

Stop and Blog the Roses, “Donna Day:  What Do Kids With Cancer Need?”

Suburban Scrawl, “It’s Donna Day!  #conquerkidscancer #DonnaDay”

Sweet Matthew Burr:  “Donna Day”

Tiny Steps Mommy, “Day Five:  Give Back Mission to Express Gratitude”

Tween Us, “Donna Day:  Raising Awareness and Money to Fund Childhood Cancer Research”

Ups and Downs of a Yoga Mom, “Today I Celebrate Donna Day by Donating to Pediatric Cancer”

We Band of Mothers, “Emily”

What a glorious Donna Day it was!  Thank you!

So I have no freaking idea why some of these links are in bold and other are not.  That is completely beyond my technical scope.  But subscribing to my favorite blogs is not!  You can do it, too! It’s true!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

Donna Day Is Here! Hooray!

This is just one of dozens of Donna Day posts published by bloggers across America today, March 1, 2013, all in support of raising $ and awareness for the good work of St. Baldrick’s, and the goal of conquering kids cancer.  I am humbled, overwhelmed, honored by the generosity of the blogging community that has embraced Donna as their own.    

I am Donna’s Mama.  I carried that girl in my belly, felt her kick inside me, was her sole form of nutrition for six months, fed her, bathed her, cuddled her, taught her her colors and numbers, loved her completely.  Life was so sweet, so good, so simple and uncomplicated.  Wake up, cuddle Donna, head to work or plan a day together, come home, cuddle Donna, sing and laugh and play.  We had it so very good, so very, very good.

And then this happened.

 

Donna during her stem cell harvest in 10/2007.
Donna during her stem cell harvest in 10/2007.

We moved to Cancerville and our lives were forever changed.  We had visited Cancerville before, caring for my Mom as she lived and died with her own brain tumor in 2004 and 2005.  This was different.  After moving to Cancerville with Donna, we learned that we would never leave.  It is our home now.  The neighborhood sucks, but damn, the neighbors are amazing.

Over three years after Donna’s death, I am still trying to wrap my head around the impact her life and story have on people.  First published in 2011, the response to Donna’s Cancer Story sort of threw me for a loop.  I hear from people around the world on a fairly regular basis about the impact Donna has had on them, how she has shaped their perspective.  People have stopped drinking or using drugs because of Donna.  People have opted to care for foster children because of Donna.  People have chosen to go into pediatric oncology nursing and doctoring because of Donna.  People have hugged their kids tighter and read them more stories and demonstrated more patience with unruly toddlers because of Donna.  People have gotten tattoos because of Donna.  People have consciously worked to help others in their community because of Donna.

You see what I mean?  It is both amazing and overwhelming and uplifting and makes me so damn proud to be her Mama.

One of those people was a reader like you.  Her name is Jamie.  She was the cousin of a friend who read Donna’s Cancer Story as it was being published in September 2011.  She wanted to help.  She wanted to make a difference.  Tentatively, she called me and we talked.  She proposed Donna’s Good Things, the charity we started after Donna died, host a St. Baldrick’s event.  Would I be interested?

Um.  Yes.

Right after Donna died, we wanted nothing more to do with cancer.  It had taken my mom and our daughter.  It had taken enough.  We wanted to do something to honor Donna, but didn’t want to give cancer any more of our time or attention.  Pfffft.  Yeah, right.  What the hell were we thinking? Pediatric cancer advocacy is now an important part of my life.  Jamie just knew that before I did.

With Jamie’s suggestion, we did our research on St. Baldrick’s.  WOW.  What a fantastic organization.  They have funded more childhood cancer research than any other entity outside the U.S. Government.  They have excellent charity ratings, an extremely streamlined administrative tier, and minimal overhead.  St. Baldrick’s is the real deal.  They were Donna-worthy, if you will.  We were in.

In just one year, Donna’s Good Things has raised over $130K for children in treatment for cancer.  BAM!  Let me tell you, there is no better way to tell cancer to SUCK IT than to help raise $ to banish it.  Our shavees know this.  Our donors know this.  I hope you know this.  And as of this year, no matter where you live, you too, can host a Donna’s Good Things shaving event in your own community.  Do you live in Montana?  NO PROBLEM!  Florida?  We got you covered?  Oregon?  New York?  California?  All things are possible with St. Baldrick’s.  Just email marytylermom@gmail.com or heather@stbaldricks.org and we will hook you up.  BOOM.

On Saturday, March 30, we will host our 2nd DGT St. Baldrick’s shaving event at Candlelite Chicago.  There will be shaving — and hey, if you have a head, you are still eligible to shave it — lots of dough can be raised in 30 days (that’s the blue button, yo).  There will be beer and pizza and burgers and tater tots.  There will be face painting.  There will be smiles.  There will be a tear or two.  There will be lots and lots of hair to sweep.  There will be cake. There will be bravery.  There will be children and old ladies and lots of folks in between.  There will be love.  There will be joy.  There will be gratitude. There will be HOPE.

Hope is what Donna taught me.  More than any other lesson, and damn, that little girl had so many lessons to share, the importance of hope and joy in our lives — just our day-to-day seemingly dreary lives — was just part of her DNA.  It is now part of my DNA.

Biologically, parents pass DNA to their children.  With Donna, it worked the other way.  That is just how damn amazing she was.  My life is more joyful and full and rich and hopeful for being Donna’s Mama.  Every day I thank her for what she has given to me, what she continues to give me and so many others.

You can do a Good Thing today and donate to our St. Baldrick’s event.  Just click on the green “DONATE” button and make a difference for a child and family undergoing cancer treatment.  It is a bitch, that cancer treatment.  Honestly.  Some days I never thought I would make it.  We lived a life for 31 months that I would not wish on anyone.  Today we live a different life.  It is calmer than while we were in active treatment, but it can be sad and lonely.  Quiet.  We miss our girl, our Donna.  We thank the stars above that Donna left us with joy and love and hope and the finest example of how to live a full and complete life.

Please, consider donating.  Now.  Not later.  Not tomorrow or next week.  You’ll forget.  You will.  I know, cause I do it all the time.  Our lives are busy and frantic and crowded with responsibilities.  In the midst of that, think of Donna and all the kiddos and families who live in Cancerville.  It is damn crowded in here, let me tell you.  We could you your help — $5, $10, $20 and up — every dollar makes a difference when it goes for research.

Tell ’em Donna sent you.

I need you.  YOU.
I need you. YOU.
Get, scootin!  Children with cancer need your help!
Get, scootin! Children with cancer need your help!

Thank you, folks!  Donna Day is one of our favorite days of the year.  

 

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