Big Shots and Little Stars

We were honored to participate in a terrific event on Tuesday.  Flashes of Hope held their annual “Big Shots and Little Stars” show with support of the Cleveland Cavaliers and Lake Erie Monsters at the Quicken Loan Arena.  The theme was James Bond and there were over 1400 people at the event which benefited Flashes of Hope and the Children’s Tumor Foundation.

Allison Clarke, who founded both Flashes of Hope and Kick It, feels passionately about pediatric cancer.  Her son Quinn, was diagnosed with rhabdomyosarcoma at age 2.  Like Brent, Quinn has had a tough road.  He also, incidentally, is missing half of his pelvis. 

Allison, who learned of our troubles through mutual friends, reached out to us early in Brent’s diagnosis, relating in a very personal way to what our journey was like.  She took plenty of time on the phone to provide a sympathetic ear to me when I had few around me who could really appreciate the challenges that we have faced.  Later, she contacted doctors that she knew, as we looked for better surgical options for Brent.  I will always be grateful for her efforts and for her kindness.

The circumstances that might cause some people live in anger have served as Allison’s motivation.  She has turned something truly horrible into something that will make a difference for others. When Quinn was recovering from pelvic surgery over 10 years ago, his roommate, a two year old, succumbed to his disease.  Quinn, then only four years old, expressed how sad he was to lose his friend and regretted that there were no photos of him.

That moment, that singular comment from her son, was a seed of inspiration planted in her mind.  Allison went on to form the non-profit Flashes of Hope.  The mission of this charity is twofold:  To photograph every child with cancer until every child is cured.  Professional photographers, hairstylists and makeup artists volunteer their time and talent, going to hospitals, cancer clinics and oncology camps.  Children, many in the midst of treatment, are offered the opportunity to have beautiful photos taken with siblings, or parents or even sometimes, a beloved doctor or nurse.  

This is an amazingly beautiful gift. While a photo with your child, particularly during the uncertainly of treatment is meaningful, harrowed parents are not likely to have the time, the energy, or the thought, to go to a photographer during their “off time.”  In the hospital, particularly, it is a blessing to have these kind people come and capture moments of tenderness, of joy, of love.

I learned at Tuesday’s event that the beautiful black and white photos have been processed and printed at White House Custom Colour in Minneapolis.  CEO Mike Hanline refused the request to discount the cost of the photos, insisting instead upon donating every proof and enlargement.  As Flashes of Hope has grown, now photographing 7,000 children per year, this gentleman donates over 150,000 beautiful prints annually.  Stunning.

I am brought to tears thinking about the gift that these folks bring to families in the midst of great struggle.  The photos can serve as a reminder of how difficult the journey has been and can be a celebration of what a child has overcome.  Or sadly, they might be the last photos that a family has of their child, capturing a moment filled with dignity and love, in the midst of battle. 

This first part of Flashes of Hope’s mission, which is active in over 55 cities, taps into the time and talent of many generous people to positively impact families in a direct way.  This is a worthy cause, all on its own.  But the second part of the mission is to support pediatric cancer research. 

Tuesday’s event took my breath away.  Through the support of Dan Gilbert, owner of the Cavs, and over 1,400 Clevelanders, $950,000 was raised for pediatric cancer research.  I was really struck by something that I read in the program: 

“We had no business getting a meeting with Dan Gilbert in 2009.  With just three paid staff members, we held the “Big Shots and Little Stars” runway event in a mall.  We asked Dan if the Cavs players could participate in the show, which we hoped could be held at the arena. To our amazement, he said yes.  He helped take the event to the next level and the level after that!”

 

Lauren, Dan Gilbert, Alex and Brent

I am astonished at the generosity of strangers and the ability that some like Allison have, to harness that generosity in order to accomplish great things.  I am inspired by how boldly she asked, and how enthusiastic the support has been, both of particular individuals, as well as the community at large.  The advances in understanding and eventually conquering pediatric cancer cannot come too soon.  With this kind of support, research can move forward faster. I am so grateful for it all.

Part of why I have been talking about this organization is because Allison called me while we were in NYC over the summer and asked if we would be willing to share our story at the event.  We agreed, happy to help this organization in any way that we could. They interviewed us a couple of months ago and put together a video which they showed at the event:

http://vimeo.com/80040863

It was an honor to be associated with an organization whose goals are so worthy, and who partners with the Children’s Oncology Group, Alex’s Lemonade Stand, The Children’s Tumor Foundation, Jeff Gordon Children’s Foundation, and Bear Necessities Pediatric Cancer Foundation.  It was a wonderful evening for our family.  Should you be interested in donating time, talent, or money to Flashes of Hope, I have included the link to their website below.

http://flashesofhope.org/about/mission

The ribbon, this month, is gold

September is pediatric cancer awareness month. 

Didn't know?  Don't feel bad.  I have two kids who have had 3 cancers between them, and I didn't know.  But then again, I am aware of pediatric cancer every day.  I don't need to set aside the thirty days in September to think about it.  We live with pediatric cancer like some hideous knickknack that we cannot ever part with.  I am grateful for the opportunity for this monstrosity to collect dust over the next 6 weeks, whereupon I hope to put it back on the shelf until after Christmas.  Very, very grateful.

But, as many of my friends either anticipate (or dread) the pulling out of the pink ribbons next month, this month's color is yellow. (Didn't know that either?  No worries!)  Dan made a fabulous banner on his facebook page, one that I only barely possess the technological wherewithal to steal.  But I did-so, take that technology!

 

 

 

 

Hollywood and our One Hip Wonder... 

 

Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience.  We absolutely never say the phrase "What are the odds?" in this house.  With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires. 

 

However, there are some things that statistics can help illuminate.  Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.   

 

While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers.  Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids.  They get the 'hand me down drugs' of the adult cancer world.  In 20 years, only one drug has been developed for kids with cancer.

 

I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit.   Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances.  Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs.  I am not at all interested in more kids getting cancer.  Naturally.

 

But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer.  Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country.  Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group.  The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.

 

I was asked by a friend about how to best support pediatric cancer.  There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research.  These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.

 

If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)

 

If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself.  (I like to think of them as the 'mutual fund' of pediatric research.)  Here are a few: 

 

Flashes of Hope                             http://www.flashesofhope.org/

Kick It:For Children's Cancer        http://www.kick-it.org/

St. Baldrick's                                  http://www.stbaldricks.org/

Alex's Lemonade Stand                 http://www.alexslemonade.org/

 

We are personally associated with the sister charities Flashes of Hope and Kick It.  Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland.  Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause.  This year, our family's story will be featured at the event, in an effort to raise some more research dollars. 

 

Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game.  It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May.  This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name.  Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds.  We are so grateful for those dollars being directed in such a personally meaningful way.

 

The CDC lists cancer as the 2nd leading cause of death of children, after accidents.  We are hoping to push that way down the list.  No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out.  We are working on helping to secure the resources for those bright minds, right now. 

 

Any help you would like to offer would be appreciated.

 

 

 

 

 

Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

http://www.cleveland.com/brecksville/index.ssf/2013/06/brecksville-broadview_heights_262.html