Category: Pediatric Cancer

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T-Shirts by Donna to Help Kids With Cancer

DRUM ROLL, PLEASE!  I am thrilled to introduce the newest campaign by my friends at Paper Clouds Apparel — art work featured by Donna.  50% of the proceeds for all shirts and accessories sold between now and June 29, 2014 will be donated to the Donna’s Good Things Campaign with the St. Baldrick’s Foundation, which, to date, has raised $241,438 for childhood cancer research.

That’s a legacy this mama is very proud of.

Robert of Paper Cloud Apparel approached me a few months ago.  I was thrilled with the idea of folks across the country wearing art made by Donna.  I was thrilled to find another way to support the important work of St. Baldrick’s.  I was thrilled that Paper Clouds both employs people with special needs and that the rest of the proceeds from the Donna campaign sales will benefit the continued support of folks with special needs.  It was a win-win proposition.

When Donna spent time in the hospital, which was a lot of time, especially in 2007 and in 2008 after her third relapse, one of her favorite things was to have Willow, the art therapist, come by for a visit.  Willow brought along paints and papers that gave Donna blessed distraction and the opportunity to create.  The nurses noticed Donna’s love of art and gifted her with an incredible easel during the Christmas in 2007 she spent hospitalized.

There were many a morning and afternoon spent in front of that easel.

One of the ways that Donna’s brain tumor seemed to impact her was spatially.  She tended to put color on top of color and restrict herself to a corner of a huge sheet of paper.  We worked with her to train her eyes to expand and to cover more of the area of the paper.  Ha!  That was when she morphed into stripes.  She loved making splashes of rainbows.  Eventually, after hearing us time and time again, “Don’t forget the top of the paper!”, she made a few huge rainbow type flags like you see here that she was so very proud of herself.

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This truck was painted during a trip to the day hospital for chemo in October 2008.  Donna had relapsed again after her July 2008 relapse.  We didn’t know it at the time, but this was the beginning of the end.  The chemo regimen was outpatient and much easier for Donna to tolerate.  It would be an eight hour day and BAM we would be home again.  Trust me that after Donna’s previous protocol of five inpatient days of chemo, it felt like a walk through the tulips.  I remember this truck so very well.  Willow brought us the tools and Donna, out of the blue, painted a truck that day.  It amazed me, as big trucks were always something she feared on Chicago streets.  This one still hangs in our home gallery.

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Happy Frog was painted at the Eric Carle Museum of Picture Book Art in Amherst, Massachusetts during a visit with the grandparents in 2008.  Donna had recovered from her stem cell transplant and it was our first opportunity to travel in eighteen months.  I worried about plane germs with such an immature immune system, but Donna was a champ and we had a beautiful trip.  The museum has this amazing art room where kids are encouraged to create on their own.  We spent a few hours with Donna’s grandmother there in our visit and Donna used sponges and paint to make this frog.  I think it was me or her grandmother who added the smile and eyes, at Donna’s request.

 

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The last work by Donna is her family portrait made during her five weeks of pre-school.  Sometimes I forget how little Donna actually was when she died.  Just four years and three months old.  So much of her art reflects that, when in my head, I have morphed Donna into this ageless, timeless font of wonder and wisdom.  I see her family portrait, and like a punch to the gut, I remember that, yes, while she was full of wonder and wisdom, Donna was still a four year old in every way.  It hurts, honestly, to think of her young vulnerability.  Seeing this family portrait made for her class brings joy, though.  This is how Donna saw us, and that, to me, is precious.

That's Me and Mary Tyler Dad, bigger than life, and Donna and her first little brother are the tiny folks to our left.
That’s Me and Mary Tyler Dad, bigger than life, and Donna and her first little brother are the tiny folks to our left.

As the mother of a daughter who died far too young, there are too few opportunities I get to parent Donna anymore.  This Paper Clouds campaign gives me that opportunity in a BIG WAY.  By spreading the word of this campaign, by working to encourage folks to wear Donna’s art, I get to be both that proud Mama of my girl, but I also get to help advocate for too many other children with cancer who desperately need a louder voice to get them the research their lives depend on, the research that St. Baldrick’s can provide.

Please consider using Paper Cloud Apparel’s new Shirt Builder tool to create designs for you and your family featuring Donna’s art.  There are sizes for men, women, children and babies.  There’s hats and totes, too!  Let’s litter the world with Donna’s art and her hope and her wonder and her joy!  Wear these shirts and tell Donna’s story loud and proud.  “Once there was a little girl named Donna and she was amazing . . .”

Click here to build your own Donna original design.  

Here is Donna painting a mural at her school that now proudly hangs in our home. Art transforms in so many ways.
Here is Donna painting a mural at her school that now proudly hangs in our home. Art transforms in so many ways.

As Donna’s Mama, I thank you greatly.  

 

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He Speaks, Again

This is a guest post by a friend and fellow Cancer Mom.

By Kathleen Manning

Have you ever had a déjà vu moment? You know, a moment when you have a strong feeling that an event or an experience, that you are in the midst of experiencing, has happened before. Déjà vu is French and, when translated into English, literally means “already seen.”

I recently had a profound déjà vu experience. It happened on May 8th, four days prior to Mother’s Day. I found myself in the market that day and nearly collided carts with another woman as I rounded a corner. And in proper grocery store etiquette, we apologetically nodded our heads and then waved to each other to go on ahead. As we were passing one another, she stopped me and put her hand on my left wrist. This complete stranger looked at me with a crooked smile and struggled to form her words. It seemed as though she had some type of neurological impairment. Perhaps she had had a stroke, although I couldn’t be certain. It was clear that she was just learning to speak English and looking for the right words. And then, completely out of context, she wished me a “Happy Mother‘s Day.” I was paralyzed, right there in front of the peanut better and jelly. My breath caught, goose bumps erupted on my skin, and my eyes welled with tears. I had just received a most incredible gift.

That was it, my déjà vu moment. You see, when I looked at this woman, this kind stranger with a crooked smile, I saw a 60 something year old immigrant woman. But I felt my 3 year-old son. I had a remarkably similar exchange with him on March 10 of 2010, just 4 months before his death.

My son, Aidan, was diagnosed with medulloblastoma, a vile malignant brain tumor, just six days before Christmas in 2009. His tumor was resected just two short days after its discovery. After surgery, Aidan was brought up to his room to recover and slept off the anesthesia most of that day. When he woke up, he was different. He had a blank stare and he didn’t speak. We were informed that one of the risks of surgeries in the area of the cerebellum was the development of something called cerebellar mutism, a symptom complex that includes decreased or absent speech, low muscle tone, unsteadiness and deceased coordination, and the inability to coordinate voluntary movements. Mutism produces a severe incoordination of the motor aspects of speech. This means that Aidan didn’t lose his language. He simply couldn’t get his mouth to work to form his words. The muscles that one uses to form their words also happen to be the same muscles that one uses to eat and the same muscles one uses for facial expressions, such as smiling. At the time, we were told that the mutism may last for as little as six days or as long as 52 months.

It was during the first week of March in 2010 when we noticed that Aidan was starting to regain some use of his mouth and facial muscles. He was slowly learning to eat and make some sounds again. We were blessed to hear his sweet giggle that week, music to our ears. And he was beginning to smile again, although he had poor control over those facial muscles. His smile would often be crooked.

I kept a blog during my son’s illness. It provided the framework for what would become Aidan’s Cancer Story, written in 2012 to recognize pediatric cancer awareness month. The following is an excerpt from the 15th entry in Aidan’s Cancer Story titled, “He Speaks”:

It was on March 10, 2010, Aidan’s 82nd day at Children’s Memorial Hospital, when we finally heard him speak. It was Aidan’s first spoken word since December 21, 2009. I was sitting next to him, in his hospital bed. We were in the middle of reading a story. He stopped me and gently put his hand on my left wrist. He then looked up at me with his crooked smile as he struggled to form his words. And in the tiniest raspy voice he said, “Mom.”

This is Aidan. He loved dinosaurs and trains and Buzz Lightyear. He had exceptional taste in music at such a tender age. Elvis Presley’s “Suspicious Minds” was a favorite to dance to. Photo October 2009
This is Aidan. He loved dinosaurs and trains and Buzz Lightyear. He had exceptional taste in music at such a tender age. Elvis Presley’s “Suspicious Minds” was a favorite to dance to. Photo October 2009

Aidan, keep speaking. I am listening.

Kathleen Manning is the co-founder and director of Aidan’s Army, a Chicago area non-profit that seeks to raise funds to support pediatric brain tumor research.

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That’s What She Said

On Saturday, a mom and fellow blogger I had never met outside of Facebook donated her son’s very first haircut to the Donna’s Good Things shave event for St. Baldrick’s.  It moved me, this kind gesture, which I secretly thought of as “pimping the cut,” despite that being terribly uncouth.

When I first learned of the gesture I thought, “Oh, that’s sweet, like so sweet,” and went along the business of planning an annual event that hopes to raise $40-$50K for childhood cancer research.  There are details, you know?  As our event got closer, I started to pay more attention.  There was a personal connection, I think, when I stopped to think about the significance of donating a first haircut.

First haircuts are important.  Somewhere, in deep storage, wrapped in a softened paper towel and brown paper bag are my very first braids, cut off at seven when my curly hair was far too unruly for my mom who had just gotten a job and needed to be there by 7 am daily.   Unruly curls need taming and taming takes time.  Hence, the haircut and the anemic braids of a fine haired curly girl resting in storage, still important enough to hold on to all these years later.

Donna’s first haircut came not from a stylist while she was proudly sitting up in a barber chair shaped like a taxi cab.  There was no lollipop at the end for being a good girl.  No, Donna’s first haircut was provided by her neurosurgeon while she was anesthetized and lying on an OR table.  And this isn’t even being melodramatic, but simply factual.    That beautiful surgeon took the time to tie those first clipped curls of Donna’s with a pretty little blue bow and put them in a Ziplock for us to keep.  I lost them almost immediately.

But I digress.

Here was a mom I didn’t know who was so moved by my daughter’s story of childhood cancer that she was offering up her son’s very first haircut. This beautiful boy will always and forever know that his blond curls that ringed his tiny toddler head helped raise money for children with cancer. That is quite a story.

St. Baldrick’s events are full of stories.  I have come to understand in my three years of hosting them, that choosing to shave is very much like choosing to adorn yourself with a tattoo.  There is usually something very personal and moving behind that choice.  And folks on the outside don’t always get it.

But sometimes, like with this boy’s Mom, you get to hear the story and understand what went behind the choice to shave to raise desperately needed dollars for pediatric cancer research.  In her blog, The Tot Wrangler, this funny, sparkling, snarky Mom gets serious and emotional.  And I, if even for a moment, get to be the proverbial fly on the wall.

And it is an odd wall to be on, when someone uses words to try and  imagine the worst, more terrifying moments of your life.  And more so, when she is successful.  The Tot Wrangler’s little one had his beautiful curls shorn off and he was bald.  But beyond that, with his wee little stature, his bald head made him look more vulnerable than he really was and Mom describes powerfully what that feels like.  Read it here.  It will move you and help you understand what it is like to parent a bald child.

Another shavee, moved by Donna’s story, opted to shave her own hair, also raising lots and lots of dollars for research.  In prepping for event day, I take a look through the shavee list, wondering who I know, who is a returning shavee (my favorite kind), who is new to the fold.  This year we had 11 men and 11 women signed up a few weeks ahead of time.  Our events are known to attract a lot of women shavees, no doubt because of this here blog.  Most of my readers are women, yo.

RaeEtta, one of our 2014 shavees, and one of many shavees with a story to tell. We are grateful.
RaeEtta, one of our 2014 shavees, and one of many shavees with a story to tell. We are grateful.

And this year, like the two years previous, are women I don’t know, haven’t met, willing to do something I myself have not done — get intimate with a set of clippers.  Very intimate.  This astounds me and flabbergasts me and makes me feel all ‘I wanna run for the hills’ because of the enormity of the gratitude I feel towards them.

It’s hard to find the words, but I will use the ones I wrote earlier tonight:

When I am brutally honest, I can admit that I frequently wonder what in the hell I ever did to be surrounded by so many abundant expressions of kindness and generosity. Like yours. I have no idea how I am so blessed.

And as I sit here late at night writing this, I am literally shaking my head, cause, yes, these amazing, humbling, beautiful and powerful gestures of kindness towards my family and our cause, many from strangers, started way back in 2007 with Donna’s diagnosis, and they have never stopped.

They are overwhelming in the most lovely of ways.  I will never, ever be able to properly express the gratitude I feel for them.  It is an endless well of thankfulness inside me, constantly flowing and sometimes pulling me under so profoundly that the only thing that helps is an hour of inane reality television, preferably with a Real Housewife on a House Hunt somewhere or other, where the people are not so grateful.

Does that make any sense?  Probably not.  I’m still trying to figure it out.

The takeaway from this here post is one of gratitude.  Thank you to all the folks who so thoroughly support our efforts to raise money for St. Baldrick’s, the number one private funder of pediatric cancer research.  I know that like Donna and like me, you have something in you that led you to this kindness of yours.  You mean something to me, even if I fumble too much to properly express that to you.  Even if I sometimes get so overwhelmed by your brave and continuing acts of kindness and compassion that I want to run for the hills for fear I will never be able to repay them.  Even if I don’t always know how to say it.  Thank you.