Tag: St. Baldrick’s

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Bald Heads, Clear Eyes, Full Hearts, Can’t Lose

Saturday was the big St. Baldrick’s shaving event our charity, Donna’s Good Things, sponsored.  I am still reeling.  To be on the receiving end of such love and support and action is humbling, astounding, and quite honestly, a little paralyzing for me.

At the root of all of this is Donna, our little girl.  The utter success of Saturday’s event is proof positive that her bright light, gone two years, five months and five days, still shines.  All that goodness she inspires fills me up.

$72,000 and still counting (unofficially) is what was raised.  Those dollars will go directly to St. Baldrick’s and be used to fund research for pediatric cancer.   We are currently $52K above goal.  WOW.  Never in a million years did we think Donna’s Good Things would become a force in Cancerville.

The purpose of our charity is two-fold:  1) to do Good Things that provide joyful opportunities for kids in difficult situations; and 2) to encourage others to do Good Things in Donna’s name, helping to fulfill her potential that was cut so dreadfully short.

When I wrote Donna’s Cancer Story in September, I had no idea what it would lead to.  Like most things in my busy life, I was just thinking about the day at hand — what am I responsible for today?  What needs to be done? For thirty-one days, that was tell the story of Donna’s cancer.  My sincere belief was that if people came to know Donna, they would know pediatric cancer and how devastating it is for these kids and their families.  And to know Donna was to love her, so in bringing her to people my hope was that knowing would become loving would become doing.  I’m strategic like that.

Saturday was the culmination of that doing for one reader.  Jamie is a mom like me.  She works outside the home like me.  She has young children like me.  Something in Donna’s story touched her so deeply that her knowing turned into doing pretty quickly.  Soon after the story ended, Jamie contacted me with the idea to host a St. Baldrick’s event.  She herself was in to shave and was committed to raising $5K.  I was a little bowled over, but I was in. Yes, of course, I wanted to help.

We first met on Jamie’s birthday.  Why she wanted to spend her birthday with a stranger organizing a charity event months away, I don’t know, but I am indebted to her.  That first night I found myself shying away from Jamie’s lofty goals.  Crazy high numbers were being thrown around and they scared the stuffing out of me.  There is nothing worse that trying to raise $ to honor your dead child and not meeting the goal.  Seriously, it is like another little death.  I cautioned reserve and a much lower goal of $20K.  Jamie was optimistic.  I was cautious.

Getting from $20K to $72K was a lot of work and involved loads of folks: The shavees who were going under the razor, the volunteers who gave time and energy, the donors who opened wallets and dug deep, and the blogging community who sounded their drums to get the word out loudly and repeatedly.  $72K for pediatric cancer research would not have happened without any of them.

Saturday’s event is still a bit of a whir to me.  I likened it to a wedding, as it is the only thing I can think of that captures the emotion, joy, good cheer, and optimism of the event.  Plus, it was crazy like a big wedding is crazy.  People wanted to be photographed with me.  People stood in line to meet me. People handed me cards with supportive words as I met them.  And like any good wedding that you’re in the middle of, I neither ate nor drank during it.  I was too busy meeting and greeting and crying and dancing.

People came from across the country for the shave.  ACROSS THE COUNTRY.  I mean, come on!  I was freaked out to meet folks, but especially women, that were not only willing to shave their head because I asked them to, but were willing to fly and drive across the country to do it. And there were dozens of people who did this.  Many of whom raised thousands of dollars.  Yowzers.  Talk about committed.  These folks, lined up for the shears, were proof that Donna was not forgotten.  And while I am not able to tuck her in or fix her fish sticks, I am able to tell her story.  And $72K later, it is clear that folks are not only listening, but doing.

And before I get to the photos, just a few moments of gratitude:

  • Thank you to Jamie for being moved to do something, and allowing me to help;
  • Thank you to all of our shavees who traveled near and far to participate in St. Baldrick’s goal of conquering kids cancer.  You raised $ and are now raising awareness.  I am at a loss to tell you what your actions mean to me;
  • Thank you to Nikki of Moms Who Drink and Swear for being the best MC this gal could ever ask for;
  • Thank you to Katy of I Want a Dumpster Baby who sold the heck out of iPad raffle tickets;
  • Thank you to Robert Jeffrey Salon who provided volunteer stylists for all our heads;
  • Thank you to Candlelite Chicago who could not have been kinder or more accommodating in the use of their fine establishment;
  • Thank you to the St. Margaret Mary community who offered their parking lot and have allowed Donna and her story to enter into the hearts and minds of the beautiful children who study there;
  • Thank you to TK Photography for shooting the event for Donna’s Good Things;
  • Thank you to the DOZENS of bloggers across the country who supported this event and encouraged their readers to do the same;
  • Thank you to Heather of St. Baldrick’s for taking us under your wing — it’s a lovely, warm place to be;
  • Thank you to my Dad for just sitting at the bar and taking it all in — witnessing what his granddaughter was still capable of doing;
  • Thank you to all of our silent auction donors and table workers;
  • Thank you to Amanda Cohen at Fine Point Productions for providing some of the most amazing face painting I have ever seen;
  • Thank you to all the supporters who came out in droves to cheer on your shavee;
  • Thank you to Julie with Lifesource and Be the Match who dropped her plans for a family event to set up a bone marrow drive
  • Our speakers, Dr. Rishi Lulla from Children’s Memorial in Chicago and our survivor friend, Brooke, who came out with her family to talk to the crowd about what cancer is like when you’re a kid in treatment;
  • Foster Dance Studios in Evanston for choreographing the Firework flash mob;
  • Performing Arts Limited for supporting Donna’s Good Things in a hundred different ways.

Whew.  Now I only need to worry about who I am missing, which I am certain of there are many.  Well, that’s for me to obsess over.  How bouts’ you obsess over some of these photos.  This is what knowing and loving and doing look like:

crowd scene
So many people!
mother-daughter
Mother-Daughter shavees
husband-wife
Husband-Wife shavees all the way from Michigan.
girls
Our youngest shavees — so brave!
PAL Studio
Our “PALS” from Performing Arts Limited
Dr. Lulla
Dr. Lulla talks about the realities of pediatric cancer.
Ellen
Ellen shaving with a brew. Thumbs up, girl!
Flash Mob
Firework flash mob!
Dollars and Hair
Taking it all off for a few bucks!
Swabbing
Joining the bone marrow donor national registry is easy!
Bald Beauties
Look at our bald beauties. Lovely ladies.
Shavin' Shelleys
The Shavin’ Shelleys from Georgia! They are peachy!
Audience shot
What you see when you’re being shaved.
Deb triumphs
Deb wins the prize for distance travel — came from California to shave!
Blogger Royalty
The Blogger Brigade!

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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