Kyler

My plan for a post tonight involving our visit to see Santa has been put on the back burner. I had this feeling I needed to check in on a child whose carepage I hadn't read in a long time. When I clicked onto the site, I was shocked to read about another sweet boy named Kyler. I cut and pasted the following message from another site:

Dear Friends,

This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.

The Stone:

My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.

The Ripple:

I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org

For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.

The Plan:

Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html

When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!

The Tidal Wave:

Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?

We didn’t think so. Give the gift of life this holiday season.

The Address:

Paul and Maria VanNocker

115 East Franklin Avenue

Edgewater Park, New Jersey 08010

With Hope,

Tracy Neilson,

Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
_________________________________________________

From Megan: I know that this time of year we are getting hit in all directions to donate to SO many charities. A lot of times you don't know where your money goes, or how much of it is actually used to meet a specific need versus administrative costs. I can tell you that a small donation to this family will be a meaningful and powerful act of love that will be used to help save this child's life. There are SO many children who are alive today after having received 3F8 treatment. It frustrates me that the FDA hasn't approved this, but the main reason is because only 4% of money allotted by our government to cancer research goes to pediatric cancer!!! Only 4%!!! That means that 96% of cancer funding for research and life saving treatments is for adults! Obviously both are more than worthy causes, but the disparity has an obvious effect on the number of apporved treatments available for children.

If you are willing to give, even just $1, please do. I would love for you to leave us a comment and let us know! Thank you SO very much!