Wednesday, September 2, 2009

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong

Every year, about 12,400 children and teens under the age of 20 are diagnosed with cancer - that is one in every 330 children. The average age of diagnosis is 5.
Although cure rates are steadily increasing, 35% of children will die from a diagnosis of cancer. Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined.

September is Childhood Cancer Awareness Month.To me there seems to be something so inherently wrong with using childhood and cancer in the same sentence,doesn't there?But it can't be ignored,not in September or any other month for that matter.Myself,my family,those who love us and most especially my sweet little Zoey,most reluctantly added cancer to our already long list of medical jargon we can recite.We have become variable experts on the topics of Down syndrome,congenital heart defects,in-utero strokes and Infantile Spasms.October of last year,we stepped into a whole different arena.Leukemia had been part of our vernacular since Zoey's birth.Having been born with a rare form of leukemia,we always knew there was a very high possibility and probability that it could in fact turn into full blown leukemia before she was 5.We prayed that she would dodge that particular bullet but here we are.This is our new world.A world I went kicking and screaming into and for some reason I just cannot step back outside it.Nor do I want to.This is where my heart is now.I spend an exorbitant amount of time daily, trying to figure out how I can make a difference.I am determined to make a difference.It is only in that quest that I will ever come to the potential acceptance of these devastating diseases that have robbed parents of their children,siblings of their siblings,loved ones of their loved ones ...the ripple effect goes on and on from there.I am proud,in many ways of this place I dwell today.I have been touched and changed by not only the courage of my own little love but by countless others who inspire me and call me to step outside my box.To my 4th floor loves:Angel Luke,Madison,Jaden,Angel Sol Merie,Kai,Angel Thomas,Christian,Klein,Justine,Angel Pablo, and Sarah, you all will forever have a piece of my heart.The grace,dignity and forgiveness by which these children have lived and yes,some have lost,their lives, has called me to do more.If I were to walk away from that floor with Zoey and never look back then I will have missed the biggest lesson of this journey.For me I must continually look at the place we are in this moment,reflect with immense gratitude on how far we have come,remember those who did not reach this day,pray for those still battling and remember always, that there are more to come after.Over the course of this month I'll post some links, upload some videos,as well as throw out some ideas on how you can get involved.Some of you have already done it.Those of you who sponsored me in my marathon or bought bracelets,your unselfish gestures are a certain step to cure. My post about the blanket project I am starting, brought some of the most amazing comments and offers of help.In fact,one sweetheart went out today and bought fabric to make blankets herself and ship them here to me.Thank you Karen and all the rest of you for the continued outpouring of love and support here for Zoey and for the rest of my family.I am often left speechless.This video leaves me speechless as well.Although I do not personally know any of the children featured in this video,they are,in some way,family.Families who have watched those they love, do battle against this insidious disease, are bonded.No matter time or distance,race or religion,were are connected.My prayers go out daily to those standing where we are today,those still in the thick of it,those grieving in a place of the unimaginable,those past their 5 year mark and still yet,those to have yet to enter this inconceivable realm.This is my life now.This has been Zoey's greatest challenge and in turn ours.I hope I can do her proud and give back a fraction of what has been given to us.But how to you pay back the gift of a life?I haven't figured that out,but I'm trying.I am really,really trying.
*Don't forget to pause the blog music at the bottom of this page in order to hear the music to the video.

11 comments:

Hope said...

Childhood cancer awareness is so important to me. Being a long term survivor of high risk cancer, I am all for research and funding (I'm also Zoey's biggest cheerleader).

Lacey said...

Beautiful video, although I hate that song. Seen it on to many videos of children who have lost their battle. I love to watch the St. Jude shows, they do so much for cancer research, and yet kids still die there too. These kids are all hero's.

Unknown said...

You know I think we all walk these dark, dreary paths (labeled as cancer, disease, seizures, infantile spasms, etc etc) to get to where you are...it has changed you, it has made you more giving, more loving, more kind, more aware. Without these challenges often times we would miss some of lifes greatest lessons. It is a difficult way to learn, a rough and painful path to walk, but you, my friend have done it with such grace, such compassion and such a spirit that you have opened so many eyes and hearts to this unfortunate part of life. You may, through your journey, be preparing another family or friend for what may come, or allowing someone to give and open their hearts...you my friend are blessing many. I am proud and blessed to call you a dear friend! Love you!

Tish said...

Oh Heather... I'm in tears of GRATITUDE for YOU sharing this video on YouTube; I will copy the link to Thomas' site!!

I love you!

Denise said...

Such an inspired post!! You know very well that I walk in fear of this disease every day. I pray Ella doesn't get it but I know it could very well be my reality. But I want to be proactive either way and I am so thankful for your teachings. In an odd way, I think the inspiration that you have gained by having walked this journey gives me hope that there can be something positive to come out of Ella having to possibly go down this road too.

Stephanie said...

I had no intentions of watching that video (due to my already weepy state) but I did.
OK, what can I do. How can I help with the blankets without actually sewing.. e-mail me!

Jeana said...

I love the quote by Lance Armstrong. Just what I needed to hear tonight.

Anonymous said...

Well said Michelle.

Carry on Heather, there are so many friends, family members and blogland families who hang on your every word and are in awe of your thoughts, words and deeds.



Love to everyone

Bluebelle

blogzilly said...

Anyone ewver tell you that you have an uncanny knack for picking just the right quotes to add to your posts?

Also, I just wanted to say how moved I was by your comment you left on Mike's blog (Marissa's Dad). The fact that with all you've been through and that you consider IS to be the one that knocked you to the floor the most was something I had never even considered before when it came to Zoey.

I always thought that the other stuff was worse for you/her. But I just didn't put the pieces together in my head to figure it out. You did in your comment and it made total sense to me.

Lacey said...

Heather, my friend, you know you can call me anytime. My phone goes with me everywhere. I sound a little wierd right now, but thats ok.

julie said...

thank you for sharing the video(how did you find it) of course it made me cry! Only to think this battle is never going to end. At least 6 more months of treatment! maddie has been on a clinical trail since her MIBG and to think what could happen to her without it i don't know.