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Make Sure Michael Is Not Alone This Holiday Season

Your contributions to Michael's journal this year made sure that they never felt alone. Your tax-deductible donation in Michael's honor will make sure that Caringbridge continues to bring hope and healing to those who need it most.

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Michael’s Story

Michael Treinen

Diagnosis: Acute Myeloid Leukemia- AML- May 11th

Michael was an official cancer survivor as of December 11, 2007

Michael had a relapse on January 25th, 2008. The leukemia returned! Bone Marrow Transplant is needed

Three Rounds of Chemo-completed- no remission

May 24th- Michael is named Indiana Assistant Coach of the Year for Lacrosse

May 25th @ 6:26 a.m. Michael became one of God's angels.

Milestones:

May 8, 2007: Preliminary Diagnosis of Lymphoma

May 11, 2007: Trip to Riley lets us know it is definitely leukemia but type is not known until early evening.

May 14th- June 8th: Round 1 in the hospital

Michael responded well to chemo treatments. Very little side effects. He did lose his hair and about 19 lbs! The fantastic smile is still intact!!!

June 15, 2007 Michael's bone marrow check shows he is in remission- less than 1% leukemia cells in his bone marrow!

June 19- July 12 Round 2 of chemo treatments in the hospital

Michael had a rough round 2- headaches throughout the chemo, tephlitus, and tear in central line. He rebounded beautifully, it only delayed him coming home by 2 days!

July 19th - August 26th Round 3 of Chemo Treatments

Michael got the alphastrep bacteria in his bloodstream- although it was controlled quickly- the toxins released went out of control sending Michael into Septic Shock and ARDS. Michael spent 21 days in ICU - heavily sedated, paralyzed, and on a ventilator. Once Michael was out of ICU- he was determined to get his strength back and get home! He came home 6 days after getting out of ICU! What a tough kid!

September 11- October 12th Round 4 of Chemo

Michael was in isolation the entire time because he tested positive for the VRE bacteria. Chemo made him sick but otherwise this was an uneventful round! YEA!!!

October 30th- December 1 Round 5 of Chemo

Michael had a fever and a sore throat for about two weeks- otherwise- uneventful!

December 11th: It is Official- Michael has beat it- he is now a cancer survivor!

January 25th- Leukemia Returns

February 4th- 9th Chemo #1 for Journey #2

February 19th- Michael heads to Riley with a fever

March 3-7- Chemo Treatment#2- Outpatient- Michael did great! No side effects!

March 15- Back at Riley with a fever and headache

March 31st-Leukemia is not in remission

April 2nd- Chemo Treatment #3 of Journey 2 begins

Latest Journal Update

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As 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!


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.