Thursday, October 6, 2011

Life After and The Big Shave

My barber and I after the deed was done!
I can hardly believe it's October already.  Life has been so busy since Ellie finished her treatment at the end of March.  We've been embracing and living our lives.  We find joy in all the little things, the small freedoms, that we used to take for granted.  Recently we were able to go to Seattle to my cousin's wedding.  I was out on the dance floor with my girls, their cousin, and a whole lot of my own cousins dancing to some lyrically inappropriate song I'm sure.  And what was I doing?  Starting to cry.  Being in that crowded place, sharing germs(!), with a child who had the immunity, energy and stamina to dance all night surrounded by family... was overwhelming for a moment.  We missed many weddings during her treatment, even my own brothers.  So to be able to rejoin our family in celebration was a really great moment to be treasured.  It may not have meant a lot to a lot of people, but it meant the world to us. 

My silly fan club!

September is Childhood Cancer Awareness month.  Although if you know me you probably already know that!  September was busy with getting the message out and also preparing for my trip to Washington, D.C. for 46 Mommas.  It brought with it a heavy heart at times.  It's hard remembering.  It's hard looking at the statistics and facts that represent the picture of life with childhood cancer.  It's hard remembering the kids we know who have passed and seeing the ache that is ever present in their families today.  But if we don't talk about it, who will?  Our kids can't!  This entered our lives and changed them forever in many ways.  It's our job to let the world know what's happening.

Here are a few of the saddest facts about childhood cancer treatment today:
  • There has only ever been ONE drug developed for the treatment of a single childhood cancer.
  • 2/3 of children who survive a childhood cancer suffer from lifelong side effects, this includes secondary cancers caused by the toxic therapies used to cure their first cancer.  Then there's the run of the mill... hearing loss, organ damage, brain damage, infertility, limb amputations, reduced immune function, shortened life span, etc... 
  • At diagnosis 80% of childhood cancer patients have cancer that has moved to other areas of the body.  This same statistic is only 20% in adults.  
  • There is no knows risks for childhood cancers.  They simply do not know why most occur.  There is no known way to prevent them.  
  • Childhood cancer is the number one disease killer of our children.  It kills more than diabetes, asthma, cystic fibrosis and pediatric AIDS combined

That isn't a pretty picture is it?   Neither is the picture of mothers, on a stage, holding pictures of their children, while someone shaves their head and that mother hopes, prays and pleads with the world to listen, to fund this vital research so another mother does not have to bear their pain, so that another brother doesn't have to miss his brother, his best friend.  So another father doesn't have to miss playing soccer with his sons - plural.  It breaks my heart.  It should break yours too.  We have suffered through treatment.  And I don't want to make light of that.  That was suffering indeed.  But we have Ellie.  We have her silly little self here to delight us all everyday.  Will she suffer in health for the rest of her life?  Yes.  Her life was forever altered, and shortened, at the age of 2.  But I can't stop looking beyond, at the ones who have lost their children.  With treatment for childhood cancers it's all an experiment.  Odds don't mean anything.  They simply don't know.  You get what you get, and there isn't anything that can help predict what that is.  We are blessed to have Ellie with us still.  I am not going to take that for granted.

 Just before losing my locks! My hair went to Wigs for Kids.

SO!  The big shave!  I flew out to DC on a Saturday.  My friend, Ivory, picked me up and whisked me across the river to her lovely Capitol Hill abode.  I was going on only a couple hours of sleep so I think the most exciting thing we did that evening was go to Whole Foods.  Which for someone with food intolerances and doesn't have a Whole Foods, really is exciting.  On Sunday we were tourists and went to see the WWII and MLK Memorials.  Both were new since my last time in DC.  On Monday and Tuesday I was on my own.  Well, Monday I had Teddy, Ivory's dog.  He and I walked all around the hill.  DC is such a beautiful city.  I absolutely loved it.  Tuesday I spent my day at the National Gallery of Art.  Oh, how long dormant that part of my life has been!  I stayed until they closed and kicked me out.  I stood in front of some artwork and laughed, some I marveled, and some ignited deep parts of my soul and made them sing.  Literally.  I was singing.  I simply must make time in my life for this again.  A funny side note... it's really hard for an artist not to TOUCH the art!  Especially the Pollock... I really wanted to touch the Pollock!  I had to settle for getting really close and looking at odd angles to see all the depth of texture while a security guard kept a close eye on me.

Ivory and I. She helped the barber rid me of my long locks.  I love this girl with tears in her eyes!

Monday evening Ivory and I went out to Arlington and met Danielle, our 46 Mommas local event planner extraordinaire.  We helped with some simple tasks for the event and then the three of us went to dinner.  It was really lovely.  She shared with us about her son, Mason, and his last days.  During the ride home Ivory shared with me about her dad's last days.  And she said what I then heard several more times during the next few days.  Through her tears, she said "I can't imagine watching your child go through what my Dad did."  Ivory worked her PR magic on DC for the Mommas.  She had everyone there.  We can't thank her enough.  She was not the only volunteer that was fueled by such motivation.  Over and over, from our volunteers, I heard the same story... cancer had touched their lives.  They had suffered themselves, or watched an adult suffer greatly at it's hands, and they could not stand the thought of a child going through that.  Sadly, the reality is, childhood cancer treatment is MORE brutal than the treatment of most adult cancers.  Children do not have drugs designed for them.  Children get hand me down drugs from adults.  And you would think that they would be given in smaller doses, but you're wrong.  Children are given much, much higher doses of the same drugs.  To the tune of 4-6 times more.  Maybe more.  Why?  Because the drugs aren't designed to kill the childhood cancers.  So they drown the kids in them and hope that it's toxic enough to kill the cancers.  Often, it's the treatments that are so toxic that they kill the child, not the cancer.  "The Children are our Future"... are we treating them that way?

 Ellie's Hope Flag (And me with frizz - humidity YIKES!)

The event itself was great.  Union Station is so beautiful.  So beautiful.  We had so much press there.  We've named them the "Momma-razzi".  I've never seen so many cameras!  All for 46 moms who have fought this horrible beast, some have "won" and others have lost.  It was really beautiful.  And it was so wonderful to see the hopes and dreams and plans come to fruition, and in many ways, our expectations were exceeded.  It was a fantastic event.  Over the next few days the Mommas hit the hill.  I had to come home so we could get ourselves on over to Seattle that weekend.  I was sorry to have missed it.  They took part in advocating with their representatives to support the Creating Hope Act.  Then they took part in the Childhood Cancer Caucus, and a press conference with the sponsors of the Creating Hope Act.  They were busy fighting for our kids.  You too can help!  Contact your representatives and ask them to support this legislation.  Here is a link to a site which will look up your representatives and provides you with a form letter which you can customize, if you wish, that is simple to send to your representatives with a few clicks of your mouse.  Click on the Creating Hope Act and follow the steps.  If you'd like to know more about how the Creating Hope Act works, DC's FOX 5 did a great little piece that will explain it.  By the way, FOX 5 also did a great piece the night of the shave that was picked up by FOX affiliates nationwide.  Thank you FOX 5!

Having a bald head attracts quite a bit of attention.  And it has been interesting to watch the reactions.  They're all over the place.  Some people look at you really sad and then look away quickly.  Obviously they think I have cancer.  I try to smile real big before they look away.  That always confuses them.  I try to wear my Momma gear to prevent this from happening but not everyone notices.  I'm bald for a reason, I want to advocate.  Yesterday I had a woman stop me at Costco and she and a man at her sample station asked all kinds of great questions and wanted to know about what I was doing.  And having Ellie with me definitely inspires people.  How can you look at her beautiful face, and her lovely curls, and say no?!  Then they wanted to know where and how they could donate!  The woman, was a cancer survivor who echoed those words I hear so much "I can't imagine a child going through this.".

One reaction that's really fun is the "Hey!  I saw you on TV!"  It happened to me first at the DC airport at 5am going through security.  "Hey, are you one of the 46 on the news last night?  That's really cool!"  On Saturday Mindi and I met for coffee here in Spokane.  Two bald heads together.  That sure gets attention!  We had a couple of tv interviews here in Spokane, KREM 2 followed us to Ellie's 6 month post-treatment appointment and Mindi and Gregory met us there.  Then on Friday morning KHQ6 asked us down to the studios to do a live interview at 5:30am!  I don't think I like live.  That was a little scary!  We were really fortunate to have gotten such interest and we're grateful for the publicity.  Hopefully someone saw it who wants to make a difference too!

 Getting shaved!

While going bald does get a lot of attention, the reason, is to get a lot of DOLLARS for research.  That's why we did it.  Not to just get attention.  There's a very important reason.  When I look down my list of donors, it's not a bunch of people with lots of money.  It's a family with 6 kids, it's a college student, it's regular working people giving a little bit of what they have.  It adds up!  Just look at my current total!  It's over $5000.  But guess what?  I'm asking for more.  I'm asking for more of you to give just a little bit of what you have to help the 46 children who today, tomorrow, next week, next month, every weekday into the future, will be diagnosed with cancer.  This is for the children of the future.  So that they can have a bright future.  Aren't they worth it to brew your own and skip those expensive coffee stand coffee's for a week?  Or a few brown bag lunches?  Every little bit counts.  If you can give $5, do it.  Every bit counts.  I, and so many others, are so grateful for every single solitary dollar! 

And with that... here's my St Baldrick's page.  If you don't want to give online, cash and checks (made out to me is easiest) can be given to me as well.  Every little bit counts.  Every bit.