Category: Pediatric Cancer

Posted on

Ladybugs are a Good Thing.

Atia as Ladybug

Three years ago today, a little ladybug of a girl was diagnosed with leukemia.  Just 17 months old at the time, Atia went through two years of aggressive daily chemotherapy.  Gratefully, Atia’s treatments worked.  Today she is an active four year old, busy with school, gymnastics, soccer, ballet and jazz.

Atia’s mom, Laura, a fellow ChicagoNow blogger, could have easily called it a day and worked hard to forget the nightmare that is pediatric cancer.  She herself is a survivor and I believe wholeheartedly that no one would have thought anything about the family moving forward, doing their best to leave Cancerville in the rearview mirror.

Laura didn’t do that.

During frequent hospital stays at Comer Children’s Hospital at the University of Chicago, Laura saw that not all children had the resources that Atia had.  Many, many families go through the burden of pediatric cancer only to face the additional burden of financing it.  Think about that.  Can you imagine worrying about how you would pay for your child’s cancer treatment?  Oy.

Laura could imagine it, as she saw it unfold throughout Atia’s treatment.  Wanting to help those families needing it the most, as well as the children facing grueling treatments like her daughter. Laura wanted to help.  She is a fierce Cancer Mom.  Out of that witnessing and wanting to do, Atia’s Project Ladybug Fund was formed.

On Thursday, May 17, Atia’s Project Ladybug will be hosting their 2nd Annual Ladybug Bash, with a Stars and Cars theme.  This is the non-profit’s primary fundraiser and  enables them to  provide some of the following:

  • emergency funding to offset the cost of emergency transportation, rent, groceries, utilities, and other basics of day-to-day like for pediatric cancer families, many of whom lose income revenue if one parent quits their job to care for their child;
  • Ladybug Love for the Holidays, providing gifts to Comer patients and their siblings;
  • Ladybug Comfort Baskets, that are received during early hospital admissions; and
  • Ladybug Lunches for pediatric cancer families.

To honor the 3rd anniversary of Atia’s diagnosis today, Atia’s Project Ladybug Fund is trying to sell 184 tickets to the event — one ticket each for the number of children that would have been diagnosed with cancer on April 17, 2010, 2011, and 2012.  I like that.  Guests will enjoy an evening of cocktails, food tastings, a fashion show, and musical entertainment in the “Ladybug Lounge.”

Here’s a great news clip from earlier this week about Atia’s Project Ladybug Fund and the Ladybug Bash:http://www.cltv.com/blogs/living-healthy-chicago/wgntv-atias-project-ladybug-fund-20120412,0,475698.story

You can purchase a ticket and get all the details on the posh event here:http://ladybugbash.charityhappenings.org/

And for all those Real Housewife fans out there, Dina Manzo, the founder of Project Ladybug and original New Jersey Real Housewife, will be there bringing the bling.

I love a happy ending!

 

 

Posted on

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!

Posted on

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