The story is written by Patrick Doughtie. It is inspired by Tyler, Patrick's son, but not his actual story. The movie is called " LETTERS TO GOD" in which Tyler is a young boy suffering from Medulloblastoma . He writes letters to God regularly. The postman ends up with the letters and tries to figure out what to do with them. He is lost in his own life and Tyler's letters will help him out in a big way. The movie is coming out in April and we all need to get the word out.
Angel John Eric's Momma writes. Tell me what you think.
If you ever get the chance to go to Candelighter's in DC, please do so. Angel John Eric's mom visited this weekend. She writes:
It is a time for the children to be just that, children. They have vocal groups, food, a juggler, a magician, face painting, cotton candy machines, popcorn machines. Every child gets a gift. Every family get a blanket. We forgot to get ours. They have food. Every family gets to have a member of their family get up and say why they are there. For the first time I couldnt get up. Once again I was taken aback with emotion. So many kids that are doing great , how could I bring them down by saying my child was an "ANGEL". Now there were families that have "ANGELS" I just didnt feel right taking away the HOPE of the evening. Next year I will. Next year I know what to expect. Next year I will be brave like the kiddos. Next year I will have the neices with me and they can talk.
Yea I know, I'm chicken.
Many of you know that there was a little girl there that sang. She is 12 years old and wanted to help. She be-freinded a little girl named Taylor that had stage 4 NB. Taylor is doing fine. Anyway, she wrote a song for Taylor and they became freinds. Taylor is 4 iIthink and cute as a button. This little girl, Abby Miller, is awsome. She is going places. We were smart enough to push record on the camera. Hope you like it.
It's just a matter of time a few days ago I saw you, you were fine Remembering what you said About the book you read The one I got you The Beginning of the End Oh how we'd talk For hours upon end What I would give Just to do it again But you're lying there In this hospital bed Won't you open your eyes And let's talk once again
(CHORUS) If you fly away tonight I want to tell you that I love you I hope that you can hear me I hope that you can feel me If you fly away tonight I want to tell you that I'm sorry That I never told you When we were face to face
Well I've been here all night And I'm watching you Breathe in and breathe out Is it really you Or just a machine That's giving you life And it's making it seem That there could be hope I could say to your face If it weren't for you That there would be no grace That's covered my life You took the time To speak into my mind And my heart Words of life
(CHORUS)
So goodbye for now And I'll see you again Some way, somehow When it's my time to go to the other side I'll hold you again And melt at your smile Now all I have Are the ones that I'm with And you taught me not To take for granted The time that we have To show that we care Speak into their minds And their hearts While they're here And say I love you
"It was like they were really best buddies," said Jasmina's mom, Thea Anema. "It was just how he spoke to her, like a daddy. It was so sweet. He was really relating to her."
Obama also delighted his little visitor with a couple of gifts - a box of M&Ms emblazoned with his name and the presidential seal and a matching presidential yo-yo.
A still-glowing Jasmina wasn't in the mood to discuss her surreal encounter last night. But she let her smile do the talking.
"She's sitting here still beaming," Anema said. "She feels very special."
Jasmina was treated like a VIP as soon as she arrived at the White House about 2:30 p.m. A group of staffers met her at a rear entrance and called her by name.
"Hi, Jasmina," one aide said, according to Anema. "Someone's waiting for you."
Jasmina, wearing her special pink sweater dress, could hardly contain her excitement as she waited to be led the Oval Office. The White House took photos of the visit but did not make them available.
It was a trip - sponsored by the Make-A-Wish foundation - that almost never happened. Jasmina fell ill Nov. 25 and remained in a hospital until yesterday.
But once she caught a glimpse of the President alone in his office, Jasmina's eyes lit up, her mother said.
Jasmina informed the President about her love of reading and told him Judy Moody books were her favorite. "He said Malia and Sasha liked those, too," Anema said.
When Obama asked Jasmina what she wanted for Christmas, she answered immediately. A violin, she told him.
Obama noted that though his daughters both play the piano, he didn't have the discipline to learn an instrument as a young boy, Jasmina's mother said.
Obama complimented Jasmina for how articulate she is, drawing a wide smile from her. It grew even wider when the President told Jasmina, "You can write me anytime. I'll get it."
Later, Jasmina was given a tour of the East Wing, where her eyes lit up at the Christmas decorations. At the holiday wish tree, she stood quietly for a moment and made a secret wish.
When it was finally time to say goodbye after their 10 minutes together, Obama beckoned Jasmina closer and said, "Come here. Give me a hug." It was, the mom said, a perfect ending for the visit.
A Very Important Request...from another mom's Carepage
Please read as I copied and pasted this message from another child's page, please read it as it has a very simple yet huge request, which could possibly save Kyler's life...
PLEASE HELP ARMS WIDE OPEN 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.
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