Tuesday, March 10, 2015

Don't Look Away, Donna Day 2015

In our society, we don't like to talk about disease. We don't like to discuss illness or death or pain or grief. We especially don't want to entertain the possibility that any of those things could ever happen to children.

It makes us uncomfortable, it unsettles us, to know that there are children out there suffering.

We cannot look away.

Children are diagnosed with cancer every single day. Children that I know and that you know and that we all have come to know and love through the magic connection of the internet.

Donna is one of those children. Today we celebrate her life and her legacy.

Courtesy of Mary Tyler Mom
I never had the honor of knowing Donna in person. Pediatric cancer has touched the lives of far too many people I know and love. This is one of those stories.

~~~~~~

On a very ordinary day, I was mindlessly walking the aisles of the grocery store when my phone rang. I glanced down and saw the caller ID, wondering what it could be regarding.

We just don't call each other these days much, do we? Texting has all but taken over as the primary form of communication between my friends and I. Consequently, phone calls don't happen often. 

When they do, there is always reason.

I brought the cart to a halt, wondering what could be wrong, swiped my finger to answer the call. 

As soon as I heard her voice, I knew.

Her voice was shaking a little, and within a fraction of a second, she'd blurted out abruptly,

"It's cancer. He has cancer. My baby has cancer."

She was calling from the hallway of the hospital. I could hear the all too familiar sounds in the background.

The aisles in the grocery store started to spin a bit. I can still remember feeling my heart sink with dread. In the following few minutes, I'd abandoned that cart half full of groceries, left the store, walked to the parking lot on autopilot and retrieved what few details she knew at that point.

Jared. Leukemia. Admitted. Chemo in a few hours. 

They were there and I was here and there was nothing I could do to help aside from listening to her on the phone that morning and being the safe place to scream and cry and worry and wonder. 

Jared. 

The little boy with the light blond hair and the clear blue eyes that I met the day he was born. He was a strong willed baby then, determined to arrive on his own terms. We knew he'd be just as strong willed now, and that he was going to need it.

As I type this, I'm texting that friend, his mother, as she sits in the hospital alongside his bed again. It's lumbar puncture day, the days she dreads the most on the calendar. His formal diagnosis is acute lymphoblastic leukemia. The worst part of the routine that is a three year long chemo journey are the painful lumbar punctures, the ones that can be the bearers of good news or news of the worst kind. Though she just completed nursing school and is well versed in the world of oncology, I don't think you ever get used to the idea that your child is the one in that bed, that your child is the one with cancer.

About a month after he was diagnosed, June 2013
Jared, like most children fighting pediatric cancer, is alive today only because of the treatments he has received and is still receiving.

One of the least discussed areas of pediatric cancer is the reality of what survival looks like for these children. They may make it out alive, see their cancers go into remission, live well into adulthood, but it is rarely without cost. Long term side effects are more common than not. Lingering damage done by the toxic chemicals that saved their lives cannot be ignored.


We must do better. We must find treatments that save lives and do it without all the damaging effects. We must fund research into the specific types of cancer that impact the lives of children.

Here's how we do it.

Today is Donna Day, a global phenomenon started by Mary Tyler Mom in memory of her precious girl, Donna.

Courtesy of Mary Tyler Mom
Donna lived here on this Earth for only a few short years, but her impact has been lasting and far reaching. I never had the chance to meet her, but I feel like I've always known her smile and her laugh and her voice.

Mary Tyler Mom lost that beautiful girl to cancer in 2009, and if you haven't read the story, I urge you to do so.  She chronicled the entire journey, sharing the reality of this disease with the world, and the stories were featured on the Huffington Post.  You can find her entire story here.

Here is a glimpse into the shining little light we celebrate today, Donna.



Childhood cancer research is woefully underfunded, amounting to only 4% of the National Cancer Institute funding.  Some organizations like the American Cancer Society spend less than 1% on children's cancers.  

We've made huge strides in treating breast cancer and many other adult cancers.  The FDA approves new cancer drugs all the time, but only one new cancer treatment drug has been approved for use in children in the last 30 years.

One.

That's not good enough.

We must do better.

St. Baldrick's raises money exclusively for childhood cancer research. Even donations of $5 and $10 add up quickly if we can spread the word enough.  

Read, share, give.

Please, if you are able, consider donating to the Donna's Good Things team. The event is scheduled for March 28th, and you can find all the information here. 


We do so miss you, sweet Donna. You'd be so proud of your mama. xo

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