The Chocolate Lady

Wednesday, May 28, 2008

Trying to deal with a jealous heart

Today, my heart was filled with conflicted emotions.

Ive been trying to make sense of things, sorting out my thoughts, it's like a Philosophy 101 class, all inside my head.

As you all know, Andrew's debut commercial, the Stand Up 2 Cancer PSA launched today. It's not just a commercial, it's a movement, a campaign, a force of talent, money and inspiration, all geared towards finding a cure for cancer.

And, as much as I want to be excited, Im jealous, Im anxious.

It reminds me of 6th grade, when my friend April invited me to a slumber party. It wasnt any old slumber party. Her parents had bought a new RV, and she and her 3 sisters each got to invite 2 friends to sleep over. We would all stay over in the RV, without parents!

That's 12 girls, and, let's just say this, her parents were THE MOST LENIENT, Im-not-your-parent-Im-your-friend parents EVER. It was guaranteed to be a blast, and in the weeks proceeding, they talked about how their parents were going to let them fill up 2 whole shopping carts with GOODIES, all for our overnight in the RV. YUM.

That night, just minutes before I was to leave, I was sitting eating dinner, which was a frozen fish stick. I HATE FISH. ALWAYS HAVE, ALWAYS WILL.

My dad, in true form, said I couldnt go to the party until I finished my fish stick.

I might have been a picky eater, but I was no dumby, and trust me, by 6th grade you learn a few tricks, like, putting the whole dang fish stick into the garbage disposal (I didnt turn it on, of course, that would be noisy.) See how smart! So, if my dad looked in the trash, it would be empty, and I would go to the party.

I went into the other room, where my dad was watching TV to happily tell him I was done, and say, "good-bye"......and then he got up, went into the kitchen, bypassed the trash, and looked straight into the garbage disposal, reached in and pulled out my FISH STICK.

He then announced, that I was grounded.

I was overwhelmed with the feeling of, "missing out"....that's the best way to describe it. Im sure I had a tantrum, begged, cried and pleaded, because I wanted so badly to be a part of the big RV Celebration.

I feel like that today.

I want so bad to be a part of this Stand Up 2 Cancer campaign. I want to celebrate our push for the cure, but Im feeling left out.

The Stand Up 2 Cancer initiative has brought together, what appears to be, every possible cancer research organization, everyone from the American Cancer Society, the Susan G. Komen Foundation, all of them, except those focused on pediatric cancers.

Some of you may not know, so, let me pull out my soapbox, and tell you that kids are left out when it comes to cancer research. The American Cancer Society, that loves to march kids around in the Relay for Life, gives approx. 1% of their funds to pediatric cancers.

Why does this matter? Because, kids cancers are different. They have different causes, different treatments.

Kids are so far behind adults, when it comes to knowing what chemos work, what cells mutations are involved, etc.

Kids get MORE CHEMOS, for LONGER PERIODS of time, AT HIGHER DOSES, than adults.....reread that, it's true.

You wont see an adult get 3.5 years of 10+ chemos, for frontline treatment of leukemia.

More than 90% of kids are on experimental trials, it is much less for adults, I think I read it was in the teens.

They just dont know what works for kids, so they bombard them with high doses of chemos.

My point, kids need the research too. So many have gone to heaven too soon, and those that survive face a life of increased risk of cancer and serious long term side effects. The damage done to little developing bodies is still unknown.

So, I hope you can see why I am having that "missing out" feeling. Im jealous that the kids arent included in the Stand Up 2 Cancer campaign.

Im pretty sure it was just an oversight. I am sure people think that the major cancer research organizations are involved in finding a cure for pediatric cancers. They probably didnt realize the importance of including organizations that focus on the kids.

I have written some emails, made some calls, posted some comments on blogs....and hope that someone listens. Our kids have important stories, they are crying out for a cure too, and I hope someone will hear them.

One way you can help....join our team, "Kids with Cancer" on the Stand Up 2 Cancer website. You dont need to donate, just join. We are currently one of the biggest teams, only a handful of the Major League Baseball teams are larger. Im hoping that if we can be the biggest team, we will be seen, we will be heard, we will be included in the fight for a cure.


Jason said...

I will join. Right now.

And I'm so sorry about the fish stick incident.

heartshapedhedges said...

thank you Jason, and as shallow as this sounds, Im still not really "over it" would have been so much fun.

(and just so Im clear, fun = unlimited ding dongs)

Grandma J said...

I already joined, and I noticed the lack of pediatric acknowledgement too. I wasn't paying too much attention at the time, but I think I saw Katie Couric on TV today promoting some cancer fundraiser that will be on Labor Day weekend. Someone asked why they would pick the same weekend to run this TV campaign as the Jerry Lewis Telethon...It dawned on me later that they were talking about Stand Up to Cancer...because I saw her picture on the website. There are some glitches in the different little slide show videos too. I hope they work those out. I did notice Pooper jumping around behind the girl in the rose colored suit.

Anonymous said...

you should publish this link on Andrews Caringbridge site and maybe inform other families which went through the same ordeal or even lost their kids. You know who they are (John, Alexia, Donovan, Cam, and soooo many others.
It should and will get moving and maybe with that the research could get started.

heartshapedhedges said...

Anonymous, thanks for the tip...actually, I have shared this info and link with many other families, and posted the info on the online support groups for parents of kids with cancer. I have also been in telephone contact with the two biggest pediataric cancer research organizations, urging them to contact Stand Up 2 Cancer, and to spread the word....hopefully this oversight will be corrected soon. :)

Di said...

Kim, I've always had a place in my heart for children affected by cancer. I joined your team.

Kristin said...

I'm in!

Listen, cardiac disease receives the same shabby treatment... very little research money is given to peds compared to adults, and, like cancer, the disease presents differently... especially congenital disease.

Anyhoo, I am off to join your team.


Kristin said...

I;m having a hard time finding your team... is there a direct link you can send me?

Grandma J said...

On the Stand Up 2 Cancer site, Pooper's team "Kids With Cancer" is on page 12. Just thought this would save people some time signing up. :))