Today is Donna Day! Remembering a 4-yr-old bright light.

Today is Donna Day!

I think about Donna all the time.  Perhaps it is because I am on the third round of raising a four-year-old girl, and Donna was a four-year-old girl when she died of a rare brain tumor called a papillary meningioma. I think about my now four-year-old, Cleo, and it is incomprehensible to imagine a life in which she never reaches her fifth birthday.

Donna happy

Donna was diagnosed at twenty months and lived another two-and-a-half years.  Some might think her life was defined by cancer, because it was filled with surgeries, chemotherapies, radiation, remissions, relapses, a stem cell transplant, and multiple hospital stays.

But that is not what defined Donna.  She was a girl who searched for joy and found it – in her family, her dance lessons, singing and playing and fresh flowers and trips to the Lincoln Park Zoo – and despite her cruelly shortened life, Donna lived until she died.

Donna’s parents have learned to choose life and hope, even after the loss of their incredible daughter. I know this, because I was at Donna’s house yesterday.  I had the joy of being greeted by a grinning diapered baby boy when I stepped into her home.   I held him close and kissed his plump cheeks, this new baby brother of Donna’s. A brother she will never know.

Donna’s mama and I had much to discuss yesterday, mostly connecting over the fact that we are both now adoptive mothers.  We talked about the sweetness and pain and love and loss that are an inseparable part of adoption.  We talked about how life is doing what you have to do for the people you love, both in good times and bad, and we talked about family.

Donna will always be a part of her family, even though she is frozen in time at age four.  Her once-baby brother, who was not even a year old when she died, has now surpassed the short life of his big sister.  He is six years old and growing every day. Her now-baby brother, the jolly boy I cuddled yesterday morning, is marching forward day by day, and in a few short years, he too will be older than his older sister.  And his parents will undoubtedly celebrate his milestones while mourning her loss.

How does a family hold so much agony and so much hope at the same time? The swelling tide of emotions threatens to burst like a volcano sometimes.  And then tears fall, like lava releasing pressure, and the pain cools enough to stop burning. In between the trickles of lava, there is a gorgeous mountain to behold, a family that keeps growing. And they remember their girl.

And today, we all get to remember Donna, because it is the Donna Day Campaign!

Donna’s parents now honor Donna’s memory through a charity that they established called Donna’s Good Things. The charity works to provide joyful opportunities for children facing adversity.

Donna’s Good Things has a team participating in the annual St. Baldrick’s fundraising event during which people volunteer to shave their heads to raise money for pediatric cancer research.  St. Baldrick’s has raised over $120 million for pediatric cancer research since its creation in 2000.

The event will take place on Saturday, March 28, 2015, at Candlelite Chicago, located at 7452 N. Western Avenue.

You can spread the word, and if you’re doing so on Twitter, use the hashtags #conquerkidscancer and #donnaday.

  • More US children will die from cancer than any other disease, or many other diseases combined;
  • Before the age of 20, 1 in 300 boys and 1 in 333 girls will be diagnosed with cancer;
  • Worldwide, a child is diagnosed with cancer every three minutes;
  • The cure rate for the most common form of pediatric cancer, ALL leukemia, is as high as 90%, but most other childhood cancers do not have that success rate, e.g., brain tumors have a 50/50 cure rate, and some, like DIPG, are known to be fatal with no known treatment or cure;
  • 73% of kids who survive their cancer will have chronic health problems as a result of their treatment and 42% will suffer severe or life-threatening conditions like secondary cancers.

For those of you who would like to learn more about Donna’s extraordinary life and legacy, please see the following:

Donna’s Cancer Story is a blog series by Sheila (who blogs as Mary Tyler Mom).  The story consists of 32 posts telling Donna’s individual story with cancer during her 31 months of treatment.

This post is dedicated in loving memory of Donna Quirke Lubek Hornik, who lived until she died, and who changes lives every single day.  Donna, may your memory bring joy to your parents for the rest of their lives, and may the changes inspired in your name provide some measure of balm to the aching pain of your absence.

Join here to support Team Donna!

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Check out Carrie Goldman’s award-winning book Bullied: What Every Parent, Teacher, and Kid Needs to Know About Ending the Cycle of Fear

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