Campaigning for a Cure

I used to work in downtown Seattle and would dread running into the overly eager, uncomfortably intrusive person who would bombard me with pictures of dying polar bears or statistics on how the planet was melting, “Not today,” I would politely say as I shimmied around them, “Not today.”

These people seemed to petition anyone with a pulse---that is until several months ago when I took a trip downtown with my two year old daughter.  Strangely, solicitor after solicitor sheepishly smiled and let us walk by without as much as a flash of a picture or a gesture of a clipboard.

 “How unusual,” I thought.  Then I glanced at my daughter---she had a feeding tube coming out of her nose, taped across her swollen cheeks. My little babe who loves to smile and wave at everyone had scared them away.  I guess the magnitude of childhood cancer looking them in the face must have outweighed a melting planet that day.

Words cannot describe the hell my child has endured. Diagnosed with two types of Leukemia, my daughter has survived rounds of chemotherapy and a bone marrow transplant.  She has suffered side effects of many drugs, braved MRI’s, biopsies, anesthesia, and countless blood draws and transfusions. 

Shortly after my daughter’s diagnosis I remember feeling like this was a mistake.  My seemingly healthy 10 month old couldn’t possibly have cancer.  I took prenatal vitamins.  I wouldn’t stand in front of a microwave during my pregnancy.  We eat organic!

Little did I know cancer is the leading cause of death by disease among children under the age of 15 in the United States. 

Now I know.

Over the course of the last two years, I have found the families who were fighting their own courageous battles against childhood cancer were the only ones who really understood this new world we found ourselves living in. 

There is a special pain reserved for parents who have to watch their children suffer as they fight for their lives.  As mothers and fathers, we are supposed to be able to kiss away owies and Band-Aid the bruises.  When your child is diagnosed with cancer, those tried and true methods just don’t cut it.  All we can do is sit and rock them for hours, praying that our repeated promise that this isn’t forever is true.  We hope that medical advancements happen today, in this very moment, so our children can live without ever enduring this kind of suffering again.

While I never wanted to toss out statistics as some kind of amateur cancer expert, the facts are staggering.  Everyday 36 children are diagnosed with cancer, 1 in 5 will die within five years.  These statistics alone are a call to action and it has become apparent to me, through my daughter’s experience, that what our children need more than ever is a voice, for people to stand up and demand change for the brutal treatment they receive to survive cancer. 

If you support cancer research, I applaud and thank you.  Do you know where your money is going though?  Only 3.8% of all cancer research funding allotted by the federal government is spent on childhood cancer research.  Is that lowly percentage seen fit to support the health of generations to come?  Unfortunately, this seems to be the sentiment of many of the major cancer research foundations.

It’s time to take action. 

I have a new found respect for enthusiastic campaigners interrupting my day.  Take it from me, cancer is a far bigger interruption in a day---wait---make that a life.

So this is me, Georgia’s mama, with a virtual clipboard, waving a picture of my beautiful daughter, a pediatric cancer survivor.  I’m sorry, but the polar bears will have to wait.  I am focused on getting my child well and raising awareness about the lack of funding for childhood cancer research. 

Dr. Michael Jensen of Seattle’s Ben Towne Center for Childhood Cancer Research has said, “We have the knowledge.  We have the technologies. We have the insights from decades of research. We're ready to make our vision a reality.”  Currently he is preparing for clinical trials that are anticipated to start this fall.

September is National Childhood Cancer Awareness Month and funding is needed to put this research into action, make strides, and attain the ultimate goal: curing childhood cancer.

Please be a part of making this goal a reality, be aware of the facts and support progress toward a cure.  My child will thank you and hopefully, because of your support, your child won’t have to.
 

My sweet Georgia girl

I'd like you to meet a few of the amazing kids we've met on our journey.  Thanks to their families for letting me share a little bit about these incredible human beings.
 

Celah

Celah was diagnosed with Infant Acute Lymphoblastic Leukemia at three months old.  Celah recently turned two and after an unexpected 6 1/2 month stay in Seattle for medical care is back home in Alaska.

 

Anna

After having a cold for about a week Anna was feeling tired and a little achy, she complained that her legs were sore and wanted to leave school early - no fevers, no bruises, no sickness.  Her mom took her to the doctor fully expecting the doctor to say she had a virus and to be sent home.  Three hours later they were at Children's being admitted for the start of her treatment.  At four years old Anna was diagnosed on January 10, 2011 with Acute Lymphoblastic Leukemia.
 

Rhema 

On January 23, 2009 Rhema was diagnosed with Desmoplastic Small Round Cell Tumors (DSRCT) she was 12 years old.  After an incredibly courageous battle she passed away on June 6, 2011. 

Hunter

Hunter was diagnosed on January 4, 2011 with Acute Myeloid Leukemia. He was 5 years old at the time.  He had five rounds of chemotherapy and spent almost nine months in Seattle, mostly in the hospital. He had a feeding tube as well as a hickman line, both were removed in September 2011 and he was able to go back to the 1st grade where he has excelled and was able to play baseball. He is now officially a year out of treatment and getting ready to start 2nd grade.
 

Kaylin

Kaylin was two years old on June 1, 2007 when she was diagnosed with Acute Lymphoblastic Leukemia, she went through treatment but relapsed with Acute Myeloid Leukemia MDS in 2010. She had stem cell transplant in July 2010 but relapsed again and had double cord blood transplant in March 2011. Currently, Kaylin has kidney failure and is on dialysis 3 days a week, she is waiting for a kidney transplant.

 

Please support childhood cancer research....
 

Ways to support the Ben Towne Foundation:
 

http://bentownefoundation.org/home/

 

Coffee for a cure

http://www.calliescoffee.com/

 

Support a friend who is running for a cure

https://bentownefoundation.myetap.org/fundraiser/portlandmarathon/individual.do?participationRef=3450.0.84294693.

 

 

If you are unable to donate money you can still make a difference....

 

 

Donate blood:
Red Cross

http://www.redcrossblood.org/donating-blood

 

Puget Sound Blood Center

http://www.psbc.org/home/index.htm

 

Sign up to be a bone marrow donor, and if you're called, donate--50% of people who are called don't.

http://marrow.org/Home.aspx


For more information on the work of Dr. Michael Jensen and facts on childhood cancer:

http://seattlemag.com/article/smart-cancer-treatment-kids

http://curechildhoodcancer.ning.com/page/facts-1