Twin Cities CureSearch Walk

20130717-001308.jpg  (Click to go to my donation page for the CureSearch Walk for Childhood Cancer to see more information.The CureSearch Walk celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. You can help us by encouraging your friends, family, co-workers and community to champion our cause.

I stumbled upon the above saying(in orange and yellow) a few months ago and I thought, ” How true this was for me.” Before John’s diagnosis of Stage IV High risk neuroblastoma and the fight for his life, I hadn’t put much thought into childhood cancer. In fact I avoided it…It made me “uncomfortable”. I can’t even believe that I am going to confess to this…but when those terribly depressing St. Jude commercials -with the sad music and those so very sick bald kids came on the TV, I couldn’t turn the channel fast enough. It was just too sad to watch.

Watch it we did…like it or not we were handed a front row seat into the devastating world of childhood cancer. There was never the option of digging my head in the sand. John’s cancer diagnosis was our ugly reality. John became one of those so very sick bald kids and our hearts ached each and every day.

My husband and I will never be the same people we were before John’s diagnosis. We’ve seen too much cancer, lived too much cancer, watched our little boy go through chemo, surgeries, a stem cell transplant, radiation, antiobody thereapy, heard of too many relapses and sadly too many children’s live lost to cancer. How could we be the same?

Today I learned of the passing of a Talia, a brave cancer warrior in the world of Nueroblastoma. You may have seen her on The Ellen show in 2012. The following is information from The Truth 365 Web site:
 In 2012, Talia was stable and we were confident that she would win her battle against this horrific disease. Today Talia’s time on earth came to an end but her legacy continues. We hope and pray that her millions of fans will continue Talia’s fight by being a voice for all children with cancer.

Talia’s dream wasn’t to become famous; her dream was to help find a cure for childhood cancer. The challenges and the solutions are contained in these three questions. Will you please read these and share this post?

Question #1: Why did Talia die?

Answer: Talia died from cancer. Her doctors did the best they could with the resources they had but the disease kept coming back. Eventually the cancer spread to her bones and her brain and it took her life.

Question #2: What do you mean by “with the resources they had”?

Answer: Unlike many adult cancers, there is very little funding for research for childhood cancer. Most of the treatments for childhood cancer were developed 20 years before Talia was even born. Without funding, kids like Talia have very few options. In fact, the National Cancer Institute (our tax dollars) gives less than 4% of its budget to childhood cancer research. Drug companies invest almost nothing because there is no profit potential.

Questions #3: Why doesn’t anyone do anything about this?

Answer: Good question. The problem is that kids with cancer have no voice. They don’t vote and their parents are often too stressed emotionally and financially to compete with lobbyists for federal funding. The bottom line is that more people need to take a stand and say that kids are important and that we need to invest more into childhood cancer research.

For example, HIV/AIDS and breast cancer used to be death sentences but we have made great progress because people took a stand and demanded more funding for research. This is what needs to happen in order for things to change for children with cancer. 

The support of Team John has been amazing and we hate to ask for more from you…but here I am doing it…Please consider giving a donation to my CureSearch Walk donation page (….a cause so near to our hearts. No amount is too small! The Gegen 5 will be participating in the Twin Cities CureSearch Walk on September 7th!

Love, Hope & Blessings,



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