Michael Treinen's Journal
Written Dec 6, 2009 8:30pmAs we begin the holiday season- please consider the following...give the gift of life....
I received an email from someone who reached out to help Michael...who shared this email...now lets pay if forward again to help Kyler...spread the news....lets bring hope and comfort in helping save Kyler's life!
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.
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.
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.
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.
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
Written Dec 6, 2009 6:55pmThe Treinens would like to thank everyone who participated and contributed to the 2nd Annual Turkey Trot. What a FABULOUS turnout- we have a little over 300 walkers/runners on Thanksgiving morning. We raised about $6600.00 for the Michael Treinen Foundation. It was an amazing event...THANK YOU! (For those that ordered t-shirts...they are going out tomrrow..sorry for the delay!)
As you can figure out, the holidays are the worst time of year...the Turkey Trot kept us busy - wish we had something to distract us during Christmas. This year we are staying home and trying out "normal"- which will be difficult. Michael's antics throughout the season are missed so much. I will never forget the year he wrapped everyone's presents in SUPER large boxes that took up so much room. He thought it was hilarious...it was....
He was always our Christmas Elf- handing out the presents on Christmas Eve- now the hat lays under the tree...not sure who will fill his place..maybe we will try something new.
My heart goes out to Tyler Genneken's family and anyone else who lost someone this past year. The first Christmas is very hard...the 2nd...not too different!
thanks for your continued support....you have no idea how uplifting it is for our entire family.
God Bless All of You during this holiday season!
Written Nov 10, 2009 3:51pm
2nd Annual Michael Treinen Foundation Turkey Trot- The Fight Continues…assisting families dealing with cancer!
5K Run/WalkThanksgiving Morning @ 9:00 a.m.
Check-in @ 7028 Oakbay Drive
Noblesville, In 46062
“The casual walk - before you eat too much!”
The walk is free but with a $20.00 donation you get the event
t-shirt free….it is Michael’s original artwork!!!!
Please pre-register at email@example.com
Give name and t-shirt size for each participant!
We’d love you to see you on Thanksgiving!