Visit a Lemonade stand

PLEASE COME OUT AND HELP US HONOR CAITLYN TODAY. WE WILL BE HAVING A LEMONADE STAND TO RAISE MONEY FOR THE CAITLYN CHURAK FOUNDATION. ALL PROCEEDS WILL GO TOWARDS GRANTING A WISH FOR PATRICK FREUND WHO IS BATTLING LEUKEMIA.



WE RECEIVED SO MUCH FROM PEOPLE WHILE CAITLYN WAS BATTLING HER CANCER. WITH THE HELP OF OTHERS WE WERE ABLE TO LIVE A LIFE TIME IN THE ONE YEAR THAT WE HAD AFTER HER DIAGNOSES. WE WOULD LIKE TO DO THE SAME FOR ANOTHER FAMILY THROUGH CAITLYNS FOUNDATION.



YOU CAN FIND A LEMONADE STAND AT THE FOLLOWING LOCATIONS:

10 e COMFORT LN PALATINE ( AT THE CORNER OF COMFORT LN AND PLUM GROVE RD)

ON HILLSIDE RD IN BARRINGTON EAST OF HOUGH ST.

AQUARIUS HAIR SALON IN PALATINE ( AT THE CORNER OF NORTHWEST HWY AND PLUM GROVE)


AND AT 2PM HAMILTON PARK IN PALATINE

Lemonade stands in memory of Caitlyn

First Annuel Lemonade stand "6/08"

It has been awhile since I have posted. I do this with encouragement from dear friends. We are approaching the one year mark since Caitlyn's death of June 27, 2008. This months has been a time of reflection over the past year. Seeing where we were a year ago and seeing how fare we have come, is some what overwhelming. It is a daily challenge to over come every odd that is handed you when you lose a child. This year has been a struggle for us I will not lie, we have had low times and then even lower times. But somehow I feel like we have won some unbeatable challenge. The challenge being cancer; it challenges you to see how far it can pull a family apart and then see if they can stay together. We are still here and at some level it feels victorious because we most certainly could be in a very different place.

The following is a passage I read and could not believe how it completely mirrored how we are feeling right now in this point in our journey. When you come across something that describes your feelings so clearly, it's comforting to know someone else gets it. It reassures you that your not crazy.

In the Bible the apostle Paul says that you should rejoice in your suffering.This advice sounds incredible, especially when you are in the midst of pain. "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" (Romans 5:3-5).

After looking closer at Paul's words, you will realize that he is not saying to be glad about what happened, not at all! He tells you that you are to use your suffering as a time of personal growth in which you ultimately experience an outpouring of God's love into your heart.

Dr. Ray Pritchard says, "Christians who most deeply experience the love of God are those who have not fought against God at the point of their suffering, but they've said, 'Lord, I don't understand. God, this doesn't make any sense. I wish this would go away, but, Lord, I'm going to cooperate with You. I'm going to walk with You through this.' "Through that, God gives them perseverance; He develops character; character becomes hope, and in the end, their hearts are soft, and then they experience the love of God.

"Lord, I'm not happy with this, but I will make the best of it. Pour out Your Spirit on me, and give me perseverance, character, and hope. Lord, I sure need hope.

So with this said we are PERSEVERING on with the 2nd annual Caitlyn Churak foundation lemonade stand this Saturday June 27th in memory of Caitlyn.

Last year just a few weeks before she passed we did our first annual lemonade sale (see pictures above). The proceeds from that went to one of Caitlyn's friends Rosie Colucci who is also battling a brain tumor.

Our goal This year is to use the proceeds to grant a wish trip for another friend of Caitlyn's whom we have met while on this journey. He is battling leukemia that has come back for the second time. Our goal is to give this family HOPE with a small act of kindness from friends and strangers.

We would like to make this a HUGE event with the help of all of you. We want to see how many people we can get to have a lemonade sale on June 27th. If you would like to participate please email me with your location. I will post it on our web site where all the stands will be. So if you can't have one yourself you can stop by one, or tell a friend where to go. As of now we have 2 in Palatine, 1 in Barrington, 1 in Schaumburg. Once you email me I will send you information that you can post at your stand about Caitlyn's foundation and where the proceeds will be going. Please spread the word and try and get as many people to have a lemonade stand as you can.

Know matter how great our own pain is cancer can not take away our CHARACTER. Character is what we have that allows us to care about others in the shadows of our own pain.

There is nothing more Caitlyn loved in the summertime then ice cream trucks and lemonade stands. So I know she will be smiling on us all while we help grant a wish for someone else.

HAPPY 7th BIRTHDAY CAITLYN, WE LOVE YOU!!

Caitlyn at her tea party bithday party -March 2008

2009 Children Memorial/Northwestern Memorial

ToyDrive

Special Thanks to:
Mrs.Held 1st grade class
Ms.Duncan's 1st grade class

Special Thanks to:

Ms. Wosniak's 3rd grade class
Mrs. Burns 3rd grade class

Patrick and Jackson delivering gifts



Patrick and Jackson were very excited to see the children on the oncology floor receive the gifts that their classmates donated. We had fun as a family picking out baby dolls that we know Caitlyn would love. We bought several different types of babies. Caitlyn loved the dolls with bottles, so we got a doll that came with "the works" bottle, diapers for potty, food. One little girl saw it right away and took it. She continued to browse to make sure she made just the right selection. Jason showed her another doll thinking she was uncertain but she stuck with the doll with the works and took off. I just laughed and thought she was a girl after Caitlyn's own heart.


After the children from the floor came, the nurses came and got toys for the patients that could not come out of their room. There were still enough toys left to fill the toy closet for another day. We were also able to take toys over to the radiation department at Northwestern Memorial Hospital. They also have a toy chest for children to visit after radiation treatment. Caitlyn visited that toy chest often. It felt good to give back to the places that were so kind to us and Caitlyn during her treatments.

THANK YOU TO ST.THERESA SCHOOL. THANK FOR HONORING CAITLYN'S BIRTHDAY BY RECOGNIZING THE CHILDREN STILL BATTLING CANCER. THANK YOU TO THE FIRST GRADERS WHO WERE SO GENEROUS WITH THEIR GIFTS. THEY ALWAYS REMEMBER CAITLYN EVERY TIME I SEE THEM AT SCHOOL. THEIR LOVE FOR HER IS VERY TOUCHING. ALSO THANK YOU TO THE THIRD GRADERS FOR SHOWING SUPPORT FOR PATRICK AND JACKSON WITH THEIR GENEROUS GIFTS. IT MEANS SO MUCH TO US WHEN PEOPLE REMEMBER OUR PRECIOUS CAITLYN.

I think this "first" is harder than all the other holidays we have gone through since she passed. This one is different because we should be celebrating another year. Birthdays are a celebration of life, however this life was cut way too short and left our family forever missing everything about her.

CAITLYN WE LOVE YOU AND MISS YOU. YOU ARE ALWAYS ON OUR MINDS AND IN OUR HEARTS. XOXO LOVE MOM & DAD PATRICK AND JACKSON.

Thanks to everyone who decorated Caityn's tree

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.
__________________________________________

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.

She travels within us

Our first day of school was today. She is not with us on our walk to school but she travels within us in all that we do. My hands feel so empty, and picking up the boys after school is so lonely. She would always wear one of her costume / princess outfits or ride her bike or drive her jeep. However painful this is we must find a new. A new way to go, and a new way to leave, a new way to live with her love. We can't share her physical love anymore so we are trying hard to learn how to love her in spirit only. Those words are easier said then done because as a parent and a human we are so used to the physical love. It is hard for the heart to not see or feel love physically. So we have to re-train ourselves slowly over time. This is an EXTREMELY PAINFUL process however the love and support from our friends, family, and community/ parish and school have helped a great deal.

We are in the process of sending out our thank you cards and I just want to say that if I inadvertently forget someone I am sorry. We just want everyone to know that we have recognized everything everyone has done. Caitlyn's last weeks and days where a true testimony of the love and support from the community at St. Theresa's School, our friends and family. No one could have had a better send off from this world than she did. From the cards that all the children made and sent her, to the lavish Disney party that was put together in her front yard.

One can only hope that when it is our time, the world around us comes out to say we love you and good bye the way all of you did for her. Her life was one to be celebrated and you all have and are doing a great job at that.

Thank you from the bottom of our hearts for holding her in your hearts. We know that she is waiting for all of you somewhere over the rainbow.

Thank you,
Churak Family

One hour at a time.

Well, on four weeks to the day of our sweet Caitlyn passing,her brother Jackson broke his two front teeth and split his lip which required only one stitch. It was very hard for me to be in the hospital with Jackson. It's strange to spend a whole year of your life in a hospital trying to save someone and then to all of a sudden not have to go there anymore. I didn't think about how it might feel or that it might be hard. But once we were in the ER Jackson and I both felt it. A sadness in our hearts and a sickness in our stomachs. Once they dismissed us we couldn't get out of their fast enough. Jackson is doing great and the dentist was able to bond his original teeth back on. We will see how long he can keep them on.

These weeks have been hard for us with pangs of sadness coming and going. I am constantly reminding myself that the world does not stop and if I stop it won't bring her back. So I try and move forward everyday. I set aside time each day to sit in her room and read a meditation book on loss.I have found this to help somewhat but I still have my moments and break down.

While Caitlyn was alive we visited the Wellness Place. This is a non-profit cancer resource center for people with cancer or anyone touched by cancer. They have a lot of supportive resources. The boys still meet with Lori Mackey once a week. She helps them explore their feelings about Caitlyn and death through art or anything they are interested in. Sometimes they bring a game to show her. Lori has offered to meet with any of Caitlyn's friends who might be having a hard time with the loss of their dear friend. It might be helpful for them to see other people their age that they know and who knew Caitlyn and are feeling the same way they are. If you are interested in your child doing a group meeting with Lori or single meeting please email me and I will help coordinate this.

Thank you to all who have sent cards. Your love and prayers are very much appreciated.

Kara

Chicagoland Ride for Kids

Thank you to everyone who made a donation to Ride for Kids in memory of Caitlyn and in support of Rosie Colucci. Although it was a difficult day, we know Caitlyn would be happy to know that we were there to support her buddy Rosie.




Over 1400 motorcyclists came out to support the cause. It was very moving to watch the huge turnout for this event. We watched with tears in our eyes and heavy hearts knowing that it was too late for Caitlyn. We also watched with hope that one day all the hard work, dedication, fundraising, and research will make a difference for Rosie and other children diagnosed with cancer.



Rosie, rode in the parade of motorcyles with her sister Bella, and mom JoAnne on a cool looking motorcycle with a sidecar. During the Celebration of Life, Rosie was invited on stage, and she did great. She was not the least bit shy and happily told the large crowd her name, age (3), and what her beads of courage were for. Each bead represents a treatment, needle poke, hair loss, surgery, chemo day....and as you can see she has quite a loooong necklace.





The Colucci/Moffa team raised $10,010!!! They were the 5th top fundraiser at the event. (www.firstgiving.com/aprilmoffa). There are Ride for Kids in various cities throughout the year and Chicago is actually leading the nation with $387,000

Thanks again for your support.


http://www.carepages.com/ (Rosiespage)


.

Passed!

CureSearch Praises Passage of Landmark “Conquer Childhood Cancer Act”
by Unanimous Consent in the United States SenateChildren with Cancer and Their Families to Benefit from Legislation

July 17, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.

The bill, introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed without amendment by unanimous consent, echoing the 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) on behalf of Senator Reed and himself asked for unanimous consent to proceed with consideration of the bill on the Senate floor.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Reed. “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”

Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.

“Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer,” said Coleman. “I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure.”

CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90 percent of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.

“The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” stated Gregory Reaman, MD, Chair of the Children’s Oncology Group.

"On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer.”

“We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed,” said Stacy Pagos Haller, Executive Director of CureSearch.

Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.


About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

The loss of even one more child is one too many

The Conquer Childhood Cancer Act passed the House 2 weeks ago. We are thankful to Representative Deborah Pryce(OH) who authored the bill in memory of her daughter Caroline who died of Neuroblastoma nearly 10 years ago.

Now we need the Senators to support it so it can be voted on and passed. It should have already been there, but 3 Senators in particular have put a "hold" on the vote.

Those 3 Senators are:
1.) Senator Tom Coburn (R-OK)
2.)Senator Jon L. Kyl (R-AZ)
3.)Senator Michael B. Enzi (R-WY)

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Did you know....despite decades of significant research progress, cancer remains the number one cause of death by disease in children. Every school day, 46 children, or two classrooms of students, are diagnosed with cancer in this country,” said Stacy Pagos Haller, Executive Director, CureSearch National Childhood Cancer Foundation. (www.curesearch.org)

“Each day that childhood cancer goes under-funded the road to discovering new treatments and cures becomes longer and more children die. The loss of even one more child is one too many. We hope that the passage of the Caroline Pryce Walker Conquer Childhood Cancer Act will have a positive impact on children now and in future generations.”

Little progress has been made in the past 30 years in prolonging the lives of children diagnosed with diffuse intrinsic pontine glioma. Treatment options are limited, and survival statistics beyond horrifying.

Caitlyn fought brave and valiant battle these past 13 months. She opened our eyes to the fact that she was one of many children fighting childhood cancer. The Conquer Childhood Cancer Act would ensure there is funding for research and advancement in treatment. No child should have to suffer from cancer. If a child has to get cancer there should be cure. We hope that the Conquer Childhood Cancer Act will make sure kids with cancer have a better chance.

walking through the dark

It has been one week since Caitlyn passed away. I get up every morning and go through the motions and put on my costume of a strong mother, So that the boys won't see that part of their mother has died too. I make it through the days and wait for the sun to set. That is when I can take off my costume, get into bed, pull the covers over my head and escape this hell through sleep. This first week felt like she was still with us just in her room sleeping or spending the night at her grandparents house. But now it is hitting me that none of those are the case. I only let myself think about how sad and lonely I feel inside for a few moments. For I fear it will wash over me like a wave and I will drown. I sit in her room for only a few minutes a day and then pull myself out before it's too late and I find myself never leaving. For me I feel grief is not something I can feel all at once. I have to allow myself to experience it only in bits and pieces at a time or I feel I may disappear.

The boys had a great birthday and the mothers and friends from STS put on such a great surprise birthday party for the boys that it really made their day. Also thanks to Midtown athletic club for hosting the party. Thank you all so much for thinking ahead for the boys happiness. Also my dad John, Margaret and myself worked hard this week and planted a Caitlyn garden in the yard. It looks great. Just when we finished planting everything we got that big rain storm on Wednesday. We all laughed that it was Caitlyn saying " no more little watering cans for me. Look what I can do". And she watered those flowers good.

Thank you to everyone who has helped us and sent cards to us. Thank you for holding us all in your prayers we truly need them now.

Kara

Caitlyn can I tell you something? I love you!!!!!!!

Caitlyn was surrounded by many family members all through the night. Father Richard came and sat with us for a few hours as well. She had such a strong spirit. The hospice nurse said they usually don't struggle to stay like she did. She had passed once around 8pm and then came back. It may have been due to my screams. So I controlled myself when she tried to pass at 12:20 a.m. On Friday morning. She was so loved. I feel she felt she could go now she had completed the one thing she needed to do and that was go to Disney. She could not have felt happier inside I know. She was able to let go in my and Jason's arms. EVERYONE who helped make her wish come true. You all truly made a miracle happen.

The arrangement have been made quick so we can still celebrate the boys birthday on June 29.

The funeral will be at 10 A.M on Saturday June 28th at St.Theresa's in Palatine.


Kara

May God watch over and protect his newest Angel.

Earlier this morning, God called home a special little Angel. As soon as details are finalized, we will post them. Thank you for all of your love and support over the past year. We love each and everyone of you. May God bless all of you and may God watch over and protect our Caitlyn.

Friends can move Disney

Caitlyn has been surrounded by so many friends and loved ones these past few weeks. With cards and flowers. We are amazed at all the talented children that have made cards for Caitlyn and her brothers. Thank you to everyone who has brought a meal and who are still signed up to bring meals. Thank you for respecting our wishes and simply leaving the cards in the mail box and not calling. It has made it easier for us to concentrate on our task at hand. That is keeping Caitlyn comfortable and trying to determine what it is she needs as she is not able to talk but a whisper if that. We have the hospice nurse come each day and check on her. She say's her heart and pulse still sound strong so that is good news I just wish she had the strength to talk. We will start her on IV fluids tomorrow because she is not able to swallow. I hope this will give her a little energy since she may be dehydrated slightly.

Well one of Caitlyn's wishes was to go to Disney after she saved up $100 this would have been her 3rd time in a 12 month period. Well she has made her goal however since she is not able to travel her dear friends have brought Disney to her. If anyone can move Disney it's Krista Budzisz and Lynn Klein with the help of all their connections. I don't know all the details on how they did this all but they expressed that they had a lot of people that wanted to jump on board and help out as soon as they asked. So I just want to thank Krista,Lynn, and all their helpers who donated or sponsored something for this Disney extravaganza for Caitlyn. I know this will put a hug sparkle in her eyes and give her sweet dreams. Angels are smiling at all of you tonight.

Caitlyn already had a small taste of Disney to day while sitting in her Royal throne made my Joann and Lynn she was greeted by Bell, Cinderella,SnowWhite,Sleeping Beauty as they read her the story of Cinderella. I could tell she was thrilled to have them in her house.

Now for the big event. It will take place in our front yard rain or shine RADIO DISNEY will be outside of our house at about 10:15 a.m. There will also be some Disney characters that will be stopping by to say hi to Caitlyn in side the house and once they are done they will come out side and talk with the children that stop by. I hope once Caitlyn has talked with each character she will be up to coming out side for a moment to say hi, but if not please enjoy the music that RADIO DISNEY will be playing. She will be thrilled just to know you are out their and having fun. We do ask that once the RADIO DISNEY truck leaves that the guest also leave so we can let Caitlyn rest. It should go till about 11 or 11:30.

Thank you everyone for showering our daughter with your love,
The Churak Family