Her light will always shine

The annual Candle Lighting Program for all children who have died at any age and from any cause… "That their light may always shine". In conjunction with the 12th Annual Worldwide Candle Lighting on Sunday, December 14 at 7 p.m. in each time zone.

We invite you and your family and friends to light a candle at 7 p.m. Sunday December 14th, 2008 wherever you are in memory of Caitlyn and all the other children we have lost in this world.
Visit the Worldwide Candle Lighting website for further details and watch the light travel around the world.

I would love to see any pictures you have of your candle lighting. If you email them to me I will post them all on our website. Send them to the churak family email address.( churakfamily@caitlynchurak.com )

The Churak Family

Remembering a princess

Thank you to our secret friends who are showing us that they are thinking of Caitlyn. Saturday when we returned home from dinner at a friends house we were greeted by a very touching sight. The tree that was planted in the fall in memory of Caitlyn was decorated with Disney Princess Christmas decorations. We all got out of the car in the middle of the driveway to look at the tree. The base of the tree was also wrapped with a Tinkerbell blanket. It felt like Christmas morning it was such an unexpected surprise.

Not only did the person/persons decorate the tree but they left a large plastic storage container in the driveway to store the ornaments in after the season. Oh and We did find the gifts for the boy's in the container as well.

Thank you to all that remind us daily that Caitlyn is in their hearts and minds. It truly means the world to us to know that Caitlyn touched so many and remains in your thoughts. I cannot explain how it feels to have others remember Caitlyn. We know we think of her daily and miss her. But to see and hear about others that we know and some that we don't know missing her brings tears to my eyes. I'm getting emotional just writing this. So thank you to everyone that is praying for us and keeping us in their thoughts. We need it now more than ever. The holidays are really shaking our foundation with mounting sadness in our hearts as the holidays draw closer.

We just have to beleive there is purpose to all of this pain, and hope we have the strength to travel the path before us.

We wish all of you a Merry Christmas,

The Churak Family

Caitlyn can never NOT be!

It has been awhile since I posted. There really is not much to say that wouldn't sound to negative or of despair from the pain that we feel every day of every minute. I could post daily on that stuff. Hell I could post by the minute of every thought or memories of Caitlyn. They all come with such joy but always end with a pain in my throat and tears clouding my vision.

So instead I have found this passage from the book "the secret". I have been really trying to believe that she is all around me. But I don't want to just try and believe it I try to truly feel it. So I found this passage to be enlightening. It is not easy to always believe our loved ones are still here with us even though we can't see, touch and feel them. It's hard to except the energy being over the physical being. But I try.


"Most people define themselves by this finite body, but you're not a finite body. Even under a microscope you're an energy field. If you ask a quantum physicist and say what creats the world? He or she will say. It can never be created or destroyed, it always was, always has been, everything that ever existed always exists, it's moving into form, through form and out of form. You go to a theologian and ask the question, what created the Universe? and he or she will say. God. Ok, describe God. "Always was and always has been, never can be created or destroyed, all that ever was, always will be. always moving into form, through form and out of form.
So if you think you're this "meat suit" running around, think again. You're a spiritual being! Your an energy field, operating in a larger energy field.
Energy just changes form. And that means you! (Caitlyn) The true essence of Caitlyn, the pure energy of Caitlyn, has always been and always will be. Caitlyn can never not be.
James Ray from the book the secret.

We have had a few sweet gifts left under Caitlyn's tree. Thank you to our friends that think of us. A hand made necklace, Disney princess globe, and a teddy bear. Thank you to girl scout troop 6145 for your donation to the National Childhood Cancer Foundation.

We made a very personal decision to donate her tumor to research in hopes that some day there will be a cure.

The Churak Family

A Special Tree

Our dear friend Vicki along with her family made arrangements for a tree to be planted in our front yard. It is very special tree planted in memory of Caitlyn. So when you drive by our house please check out our Caitlyn tree.

Thank you Vicki and Ken - you are a good neighbors, and great friends.

-The Churak Family

Think Like a Tree

Soak up the sun

Affirm life's magic

Be graceful in the wind

Stand tall after a storm

Feel refreshed after it rains

Grow strong

Be prepared for each season

Provide shelter to strangers

Hang tough through a cold spell

Emerge renewed at the first signs of spring

Stay deeply rooted while reaching for the sky

Be still long enough to hear your own leaves rustling.

He who plants a tree, plants a hope

Remembering Caitlyn in our thoughts

It has been awhile since I have posted. I guess there is not much to post but the obvious.It's about how we are doing as a family during this time that we are trying to find a new way to live. It is not easy.We are stumbling a lot or should I say I am. I know this is hard for the boy's even though they are not as forth coming with their feelings as I am. We talk of Caitlyn daily about different things she once did or how she might react to something that has happened with us. We find our self laughing and it feels good to remember the fun times with her.

We have suffered another loss just a few weeks ago. Jason's Uncle Mike passed away from a brain tumor. He was diagnosed about 3 months before Caitlyn was diagnosed. They both had different tumors but were both given the same prognosis about a year to live. Caitlyn and Mike went through radiation at the same time. It helped her feel more comfortable knowing he was going through it as well. We saw him quite a lot this summer and Caitlyn was drawn to him. She said he was Santa. He really did look like santa with his white beard. The two of them had a special connection. I know they are together now looking down on us and watching over us.

It hits me everyday I wake up how life goes on and nothing stops. Even with us Caitlyn passed on a Friday, we buried her on Saturday, the boys celebrated their 8Th birthday on Sunday, then had a party on Monday with friends. There are times that I look in the mirror and I don't recognize myself as a mother who has lost her only daughter. This is not my life, this couldn't of happened to me. I still think I must be dreaming and some how I will wake up from this long painful sleep. I laugh and smile on the outside these days because the inside is to painful to show the rest of the world.

Life does go on and we are left here without our sweet Caitlyn. We are left to feel the pain of her absence while we try to live and not just exist. I know when people see us they want to ask how are you? Well I know you already know the answer to that question, so don't ask it. Instead tell us something you remember about Caitlyn. If you want to say something but don't know what to say recall a memory about her or just say her name. To hear her name may bring tears to my eyes but they are tears of joy that she is on others minds.

She is now full of the knowledge that we are all searching for but will never know the answers to until we are in heaven.

There have been some children that I have followed and kept in touch with that have passed.It breaks my heart just like they were my own Caitlyn. I guess because I know to well what they are going through and it is devastating. If you could please keep their family's in your prayers. Mara Adams, Mariah Klein, and just today Caitlyn Cotton passed away. If you could visit Caitlyn's site and let their family know you are thinking of them. Caitlyn Cotton was only diagnosed 1 month ago. So this has been very sudden for this family.

www.caringbridge.org/visit/caitlyncotton

Thank you for following our story and remembering Caitlyn. Thank you to everyone who has sent us cards in the past few weeks remembering her. We received a packet of cards today from the 6Th grade girl scouts troop at St.Theresa's school. Patrick read them all to me and asked why I was crying? I told him because people are thinking of Caitlyn and that makes me happy. Thank you to our family, friends and school St. Theresa's for showing us so much love and support.

The Churak Family

Please read this letter from Sandy Smith, the mother of Andrew, another child battling DIPG.
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September 26, 2008

Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month?

I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.

Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with—and dying from—cancer desperately need that same attention...and funding.

Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”

September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news—but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”

Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?

When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.

The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.

How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?

How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?

How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?

How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?

How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?

Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?

Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosis—do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then
, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....

I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of four precious children who died this week—within 48 hours—as a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...and Brynne. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of child belonging to someone in the media? Will it be your child?

Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.

A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.

With Hope for Our Children,

Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
www.caringbridge.org/visit/aws

www.JustOneMoreDay.org

Childhood Cancer Awareness

Please visit http://www.completethecure.com/ and click on one of the videos, or all of them. For each video that you click on and watch, corporate donors will donate .25 cents to pediatric cancer research. Take some time out of your day and do this for all the kids out there.

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September is Childhood Cancer Awareness Month please pray for all the kids still battling.



Did you know that this month is National Childhood Cancer Awareness Month in the USA. Here are some facts about Childhood Cancer and DIPG

• Cancer remains the number one disease that claims the lives of our children. Each year cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined.

• Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer. That’s the equivalent of two average size classrooms diagnosed each school day.

• Brain tumors are the second leading cause of cancer-related deaths in children under age 20 in the USA. Leukemia remains the first.

• An estimated 3,410 children under age 20 are diagnosed annually in the USA with a brain tumor. DIPG accounts for about 250 of those cases.

• The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. Radiation typically only prolongs life for 6-9 months; there have been no other significant medical advances for DIPG in the last 30 years.

• Because pediatric cancers are considered rare as compared to adult cancers, the market potential for a new drug is very small, and very few drug companies actively seek clinical trials for childhood cancer drugs. A government report in April found a “near absence” of research into pediatric cancer drugs. According to a report by the Institute of Medicine, a non-profit group that advises the government on health policy, approximately half of the oncology drugs to treat children are at least 20 years old. Additionally, pharmaceutical companies do not test their drugs on pediatric cancers because they run a risk of failure with a drug that has been effective in the more lucrative adult market.

• Despite the grim prognosis for DIPG and lack of advances in finding a cure, there have been significant achievements for other pediatric cancers. Today, a child with cancer has an over 75% chance of survival. Breakthroughs in pediatric oncology will undoubtedly continue to progress the diagnosis and treatment of adult cancers. Many of the principles in therapy used today in treating adults were first developed and tested for children.