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)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Taking time to say goodbye

There is never enough time in a day, week, month, year, or life time to say goodbye to someone you love. Someone who shares your heart. The year that we were given to say goodbye to Caitlyn has gone by so fast. I try and remind myself that God blessed us with time but my feelings of gratitude come and go with my heartache. I try and remind myself that some people lose a loved one in a sudden accident and never have the time to process it or say all the things they wanted to say to that person. With that thought in mind I try and tell Caitlyn as much as I can but it still feels like it's not enough. She has not lived enough to understand all the things I want to share with her.

The hardest part is trying to prepare her for where she is going. Telling her of all the people she will have waiting for her. This is hard for me because I won't be there yet, with her. She is very attached to me at this time calling my name every second I'm away from her. Even when I'm sitting with her she still says "Mom, Mom". And it is usually followed by "Mom can I tell you something? I love you." I did break down and cry a little too much today as she really seemed out of it. However she very clearly told me to "build a bridge and get over it." To which I responded, "I will but it is going to be a veeeery long bridge, that will take a long time to build, and it will be a long journey to cross it. But don't worry we will be OK when you need to go. Just don't forget to say goodbye one last time to us, and we will all say goodbye to you and let you fly. You have fulfilled everything in your 6 years of life that it takes people a lifetime to do. That is, you have touched the hearts of people who love you and people who don't even know you. That is a special gift that not everyone can experience. "

This past week has been busy with hospice coming in and friends and family coming over to help. We did have two days that people stopped by between 1-2 to say hello to Caitlyn and she loved it. She is not able to express her smiles as easily any more but I can see it in her eyes. Friday Krista Budzisz, and Lynn Klein brought over a wonderful picnic. We sat on the front lawn and greeted everyone that came to say hi. It was a perfect day.
All the cards that people have been sending are wonderful. The kids love them. It's amazing what mail can do for the spirit of a child. Again it's the simple things that make us feel loved. Thank you to everyone who has stopped by to say hi, or take the boys out for a day of fun at the pool Ann Cygnar, or the movies Kate Duncan, Barbara Held. And of course the Grandparents and Aunt Margaret and Cindy. Thanks for the day at the pool Cindy's aunt and uncle Don and Betty. Thank you everyone. Please continue to pray for our strength to build our bridge and make the journey across it. As one wise little girl told me I needed to do.

Kara

Time to say we love you Caitlyn!!!!!

Well I have sat down at my computer countless times to send out an update but could not find the words to say what we are going through or how Caitlyn is doing. It changes day by day now as opposed to week by week.

We have consulted with the doctor and we are having hospice come out and help us walk through this very difficult time. Caitlyn is showing signs of being on the path.

I am taking this time to spend with Caitlyn as she does not want me to leave her side. We have explained to the boys what is happening and what is to come. I have put off saying anything to Caitlyn about what is happening until now, but feel the time has come. I have told her about her Grandparents and Uncle who are waiting for her in heaven. She was excited that Grandma Bernice would take care of her. That gave me comfort seeing her excitement about meeting Grandma Bernice.

I am asking people not to call the house as I am not able to talk on the phone. I need to focus on saying goodbye and helping the boys say goodbye. Caitlyn and the boys love to get mail; so if you would like to mail a letter or card they would be thrilled to get mail. Also I told Caitlyn I was not going to take anymore phone calls and she was happy about that. Also she ia happy about getting mail.

She also said people could stop by to say hi. I thought that might lead to to much commotion so we came up with a plan. If people would like to stop by and say hi between 1pm - 2pm Wed, Thur,Fri that would be fine. I will do a follow up for next week to let people know if this still works for us. If you want to send a card you may want to drop it off if you live in the area, since we are not sure how much time we have. Please leave all cards in the mailbox (please don't ring the doorbell if it is not between 1-2p ).

We would like to thank everyone for your prayers, love and support for our family it has helped us so much and put many of smiles on our faces. I will try and answer emails if people need to get in touch with me.

Love,
The Churak's

Palatine 5K Walk/Run 8/17/2008

Palatine Area Residents ~
This summer there is a local event raising money for brain tumor research.
Walk, Run, or Volunteer ~ Here is the info:


Date: Sunday, August 17, 2008
Time: 07:30 AM
Venue: DOWNTOWN PALATINE

Start Line: Slade Street and Greeley Street Palatine, IL 60067

Description: Joggin for the Noggin Fun Run/Walk 5k will benefit families and patients whose lives have been affected by brain cancer. All proceeds will go The Tug McGraw Foundation and the Preston Robert Tisch Brain Tumor Clinic at Duke University Medical Center. Additional Information: http://www.jogginforthenoggin.com/ or email jenny@jogginforthenoggin.com
Stroller friendly course!

Post-Race Party: DURTY NELLIES IRISH PUB located directly across the street from the finish line just north of the train tracks.

VOLUNTEERS NEEDED!! PLEASE CONTACT: jenny@jogginforthenoggin.com for further details.

Fees:$25.00 Children under 10 FREE
Website:http://jogginforthenoggin.com/

The Tug McGraw FoundationThe Tug McGraw Foundation was established to raise funds for pioneering brain cancer research, increase public awareness of the disease. Over 200,000 adults and children annually receive a diagnosis of brain cancer, and the mission of the Foundation is to support research that will improve their quality of life in the physical, social, spiritual, and cognitive areas. The Foundation develops programs and raises funds for three specific elements in this mission. VISIT: http://www.tugmcgraw.org/

The Brain Tumor Clinic at DukeTheir mission: (1)To cure brain and spinal tumors (2)To translate scientific advances in our research laboratories to state-of-the-art treatments for the patient (3)To provide the resources and support necessary for patients and their families to meet the challenges of living with a brain tumor VISIT: www.cancer.duke.edu/btc


Jen McDevitt ~ is local resident, a runner, and brain cancer survivor. Her son will be starting STS Kindergarten in the fall. Click here to read her story: http://jogginforthenoggin.com/uploads/DescriptionJFTN3.pdf

Graduation

Well, tomorrow is Caitlyn's Kindergarten graduation. She has not been to school since spring break. But Caitlyn will come back for the graduation. The school year is ending this week. The boys will be going on to third grade. They will have their Field days on Tuesday and I will be taking Caitlyn to it just like last year to help cheer on her brothers. A year ago we went to their Field days right after her 4th round of radiation treatment. What I wouldn't do to be able to go back even one year. She ran with the boys on their teams and played the games with them. I'm afraid this year she will have to watch from the side.

We had a great family day today. We went looking for this restaurant off the Chain O'Lakes that Jason and I had found one day while we were out boating long before kids. We did not find it. However we found this restaurant that turned out to be better for the kids. It had a beach and a play ground. So after we ate we all walked down to the beach. Caitlyn got a special ride from dad in his arms. She did not want to go. She said she just wanted to go home. Well, we kind of forced her because I knew once she got her feet in the sand she would love it and remember that she loves the sand. Well it worked we sat there and played in the sand for about 2 hours. She had a great time digging and covering my legs in sand. The boys had fun playing with some other kids that were there. I love how kids just make new friends where ever they go. It was one of those great days with great weather that just happens with out planning.
The boys have been so kind to Caitlyn and helping take care of her. It is so nice to see. I just wish they would be nice to each other. I guess you can't get everything at once. Jason and I look forward to many more summer days with the kids like this one.

Caitlyn,
You are my best friend. I wake up in the morning and thank God for the gift of you in my life. I go to sleep at night and I pray to never miss holding you in my arms and smelling your hair. I pray that I will have the opportunity to share my life experiences with you and watch you experience your own life. I enjoy spending my days laughing with you and playing with you. You make my life complete and my heart whole. You were sent here to complete me and for that I thank God every day. You will never know how much you mean to me until you have your own children and I pray to God to let US see that day.

Love ,
Mommy

We finally got some new photos added to the album. To view please visit: www.caitlynchurak.com/indexfiles/Album.htm



*

National Childhood Cancer Awareness Day

Senate Passes Allard-Clinton
‘National Childhood Cancer Awareness Day’ Resolution

Washington, D.C. – September 13, 2008 will now be recognized as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

“Never before in history has the dream of eliminating childhood cancer been so attainable, yet seemed so elusive,” said Senator Allard. “We live in a nation where the effectiveness of treatments and technology offer hope to children who dream of a bright future. Each case of childhood cancer is a very personal tragedy that can strike any family with children, at anytime, anywhere. In setting aside September 13th to recognize this battle on cancer, we continue of our efforts to draw attention to the victims of childhood cancer and the great work of the families and organizations who continue the fight.”

"We have made tremendous strides in the fight against childhood cancer, but far too many children still suffer and lose their lives to this illness. The more we know as a nation the better able we will be to prevent and treat the disease and help those who are battling and surviving pediatric cancers. National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure," said Senator Clinton.

Childhood cancer is the number one disease killer and the second overall leading cause of death of children in the United States. More than 10,000 children under the age of 15 in the United States are diagnosed with cancer annually.

www.curesearch.org

Rosie

Thanks for supporting the Rummage for Rosie/Bella's bake sale this weekend. Please keep Rosie and her family in your prayers.

For more info about NF:
http://www.researchforrosie.com/

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

http://www.ctf.org/

http://www.dailyherald.com/story/?id=194098

Lemonade Stand

This week Caitlyn had a MRI. The MRI showed additional tumor growth. Despite high hopes it appears that Nimotuzamab may not be the drug for Caitlyn. The nimotuzamab is an 8 week protocol so Caitlyn will finish out the next 3 treatments. At that time the family will decide what to do, keeping in mind what is the best for Caitlyn and the family.

In the meantime the family is doing their best to take one day at a time. They are finding joy in making Caitlyn's little wishes and dreams come true. Caitlyn has always wanted a bikini but Kara has always told her not til she is older ~ well Caitlyn got her first bikini when she went to Memphis and she looked adorable wearing it. One day she woke up from a nap told her mom that her "mission for the day was to go to Target," so they went to Target. She's always wanted a gumball machine in her bedroom ~ so recently after a visit to Chuck E. Cheese she and her mom earned enough tickets to buy one.

Sunday (5/25) ~ Caitlyn's wish is to have a lemonade stand.....If you are in the neighborhood drive on by the Churak's between 12 noon - 2p.

Thank you for all the prayers, and words of encouragement they really are appreciated. Please keep them coming as they are needed more than ever. Please especially pray that God provides guidance in the days ahead.

Thanks as always for your kindness and prayers.
~Margaret

Week 4

This is just a quick post for Kara. She has been trying to find time to get on the computer but with everything going on, life is a little hectic. She asked me to post something because they are getting ready to take a quick road trip this weekend. Caitlyn, Jackson, and Patrick are looking forward to visiting The King (in Memphis). The kids are Elvis fans and like to sing Blue Suede Shoes ("You can do anything, but don't you step on my blue suede shoes." )

It is week 4 on the nimotuzamab treatment. The doctors say that it may take up to eight weeks for results. So far there is not a change in her symptoms. She continues to have balance issues, and her walk is wobbly. She can get around a little bit, but mostly requires assistance especially going up and down the stairs. She is still experiencing double vision ~ and was fitted for glasses to help with that. The biggest side effect from the new medicine is that she is extremely tired ~ and needs several naps to get through the day. They are also dealing with Caitlyn's hearty appetitte due to the steroid she is taking (prescribed to reduce swelling of the tumor).

The family is so grateful for the prayers for Caitlyn. They have been blessed to have such a supportive school, parish, and community. Your continued prayers for the family are greatly appreciated. Thank you for caring about the Churak Family.

~Margaret

Team Caitlyn way to go!!!!!!!

see pix: www.caitlynchurak.com/26apr2008.html

What a great day Saturday was. Even with the high winds and cold weather our team showed up and did a great job at the walk. The team raised $13,105. What a great job and to think I set our goal at $800. I will have pictures posted soon.

It was very emotional at times to see all the people walking with pictures of loved ones. Caitlyn tried to get out and walk a few times as well as run. Her balance is so off that it just was not possible. I did all I could to not break down. It was easier to talk about her cancer when she did not have any symptoms. But now it is staring us in the face and it brings me to my knees every time I think about it, or see her struggle with daily simple tasks.

This is not to say we don't have faith. We have not given up nor will we. She goes in tomorrow to have a port put in to help her with her weekly chemo treatments. After a year her arms are shot and quite frankly she has had it with needles. So please pray that all goes well tomorrow and that the new drug starts to do it's magic for her.

She asks me everyday when will I be able to walk again and not see double. I keep telling her soon and hold her in my arms.

Kara and family

New Treatment - Nimotuzamab

Caitlyn started her new treatment yesterday. It is a drug that is new to the country only two other children in the US are on it and she is the first at CMH to have it,It is called Nimotuzamab. It is from Germany and Japan. In a study of 40 children in Germany a few of them showed stable or shrinking of the tumor. There is a child in Texas that has been on it for 8 weeks and just had her MRI and it showed stable. The other child is in NY and she has only been on it for 3 weeks so we don't know yet. But Jason, my husband is the one that found this and brought it to our doctors attention who is a great doctor. But why did he not know of this. I guess they see so much and don't get excited over every little trial because they don't often prove to save many lives. However with our persistence of getting this drug our doctor worked very hard with many legal and federal sources to get this drug administered here at Children's.

This was part of our reason for the long wait between drugs. She has not been on anything for 5 weeks now. There was nothing really out there that showed any promise. We are hoping for the best with this one. We are dealing with a lot of symptoms now and I just hope that the drug is able to catch up and stop the progression of this cancer and it's symptoms.

Caitlyn did not attend school this week and has not really been back to school since spring break. The changes that we have seen in her do not make me feel comfortable about leaving her alone. Her balance is way off. Her vision is double. And her personality has really changed more of a digression. I can't really blame her. I can't imagine how it must feel to not be able to walk, seeing double and pressure in your head. I think it would make anyone act a little off.

I thank God every day for her friends and mine for understanding all of this, it is not easy to endure. We have been blessed with so many friends and family that continue to amaze me with ways to make Caitlyn and us feel special and make the most of every moment. Our school and Church has shown so much support and love that it is truly overwhelming.

Back from Disney

Sorry for the delay in my posting we have had a lot going on.

We survived our road trip to and from Disney. It was actually not too bad of a drive. The hard part was at 3am when I was trying to hand over the driving to Jason and we were both too tired to keep going so we pulled over for and slept for a couple hours. The trip was great. The boys had fun riding the rides. Caitlyn had an appointment inside the castle for her princess makeover. She chose Ariel's wedding dress. I will post some pictures soon.

We can finally start to feel summer coming and this is a very fun time of year for me. I enjoy being outside with the kids on bike rides, walks, or just getting a blanket out and laying in the yard. Caitlyn has already started her summer picnics. She had one this weekend with Grandma Margaret. The boys and Caitlyn got their bikes out, and Caitlyn has been having so much fun riding hers. She has a list of things she feels she must do and I'm trying to keep up. I have learned no matter how sick kids are (or mine anyway) they still have more energy than me.

A lot has changed with Caitlyn in such a short time. By the end of our trip Caitlyn was showing symptoms. They all came so fast, just like they did a year ago. She has lost her balance she can not go up and down stairs alone. Her speech is hard to understand at times. Her left side of her face has lost some of it's strength. We started her back on steroids last Friday to help her regain her balance,vision, and speech.

However with all of this she did make it to school last Friday for 2 hours. She insisted on going. It's important to let her keep a connection with the other kids. She loves school and always feels so happy after she goes.

Now for her treatment plan. This has been quite an ordeal waiting for somthing to open up and watch her decline in the process. I can not put into words as a parent how this has torn me apart inside.

She had a MRI yesterday. There was concern about pressure; but the mri results show that the ventricles are still open, meaning she will not have to have a shunt. There is a new drug we are going to try called nimotuzumab. Since it has been recently approved for use in the United States, Children’s Memorial Hospital needs to pass some review processes before they can start administering the medicine. We are hoping that occurs this week. In addition Caitlyn is going to have surgery to get a chest port. Her little veins are shot from all the needle pokes...so this will hopefully make administering medicine easier. Caitlyn is a good patient -- but as you can imagine after all she has been through - she is not a fan of needles; so we are hoping this makes trips to the doctor a little less traumatic.

Thank you for all your prayers,
Kara

Disney or Bust

Well we are leaving this week for Disney. It is Caitlyn's wish to go back and get a dress she saw last time we were there. Cinderellas Wedding dress. However a good friend has told me it is not there anymore. This may be a problem. I hope we can work around this and find something else. Due to the pressure flying puts on her brain we are driving down this time. I will think only positive thoughts about this road trip LOL.

We are still on the search for a new treatment for Caitlyn. It has been 4 weeks since she has had any chemo. She is starting to show some signs so I pray that we find something fast. This is a very scary time to feel like you are doing nothing to save her. Waiting for a drug to become available makes me feel like I'm under water holding my breath and I'm almost out of air but I can't come up because I'm stuck.

This week will be wonderful to slow down and visit the place she has been talking about for the last 8 months. Thank you for all of your emails and support. I know everyone has heartache in their life, so we thank you for taking time out to think of us.

Also If you could say a special prayer for Jackson's teacher's son. He was in a bad car accident and we pray that he has a full recovery and that the family has the support they need to help him get through this.

Kara

ABTA Walk - April 26, 2008

A Miracle for Caitlyn Team

to participate in the

ABTA - Path to Progess

5K Run/Walk

Saturday, April 26, 2008

Montrose Harbor, Chicago

Food & Festivities 8 am Start time 10 am

On April 26, 2008, our team A Miracle for Caitlyn will come together to raise money for brain tumor research. If you are interested in joining the team, or making a donation to the American Brain Tumor Association then please visit the team page at:

http://hope.abta.org/site/TR/ABTAEvent/PathtoProgress?pg=team&fr_id=1220&team_id=4380

If you prefer to write a check you can give it to a team member or mail it to:

American Brain Tumor Association
2720 River Road
Des Plaines, IL 60018
++Please make checks payable to: ABTA/Path to Progress

+++ Indicate in the memo field on the check: PTP/Caitlyn Churak -- and your name will be added to the fundraising honor roll on the team web page.


Click here for a brochure with details about the event:
http://hope.abta.org/site/DocServer/PTP_RegBroch_08.pdf?docID=3061

Thank you for your support !

03/26/2008

The MRI results show additional tumor growth. The tumor grew by one millimeter on two sides of the tumor. It doesn't seem like a lot of growth; but it is enough that Caitlyn's treatment plan is up for discussion again. This is a difficult time for the Churak's so I ask that you keep them in your prayers.

I recently read Caitlyn's guestbook; and one of the DIPG parents signed, "My thoughts and prayers are with you, that you may continue to see the light in all the darkness." I have to say that is my prayer for the Churaks too.

I sat with Caitlyn and Jackson while Kara and Jason met with doctors. Caitlyn had a tough day. She was sedated for the MRI which left her feeling groggy; but she bounced back and enjoyed watching Sponge Bob, coloring, eating cheez-its, and drinking sprite shortly thereafter. Jackson was such a patient little guy yesterday. He may be only 7; but was such a good big brother. It is amazing how resilient children are.

I have to say I don't know where Kara and Jason find the strength. I know they both are devastated by the latest news; yet they are able to put a smile of their face and enjoy precious moments with Caitlyn and the boys.

Please pray that God watches over the family and gives them strength in the days ahead.

Thanks,
Margaret Donahue

Birthdays are a blessing

Well this is lesson 529, that Caitlyn has taught me in the last 9 months. I have been dreading every birthday that I have had since I turned 30. I look in the mirror and concentrate on the lines in my face or the toll that life has put on me in my appearance and think Oh I can't believe I'm another year older with great dread and remorse. I think of treaments I could have to remove some of those birthdays, but only contemplate them because it may seem too vain. But I just want to erase those years that have been given to me.

Well after celebrating Caitlyn's 6th birthday with her in good health it hit me like a ton of bricks. I have been taking the years on my face for granted. Thinking about how I can erase them. How I can take back time. Realizing I have been taking all my birthdays for granted. Approaching each one after a certain age with fear and regret. All Caitlyn can talk about is her next birthday. She asks how long till she turns 7? She is already planning her next party and what she wants.

OK GOD I'm tired of learning lessons. This one is a Doozy. Yes, I see the joy of each year. I will no longer dread another birthday. I will thank you for each day that I have here with the ones I love. I will no longer look in the mirror and concentrate on how time is showing in my face. Instead I will be thankful that you have given me this time and these lines. How can we dread getting older when there are so many children who's only thought is how long till my next birthday. And their chances of having another birthday are very slim. Birthdays are a gift and I never realized that before now.

So happy birthday to Caitlyn for reaching 6 and may we enjoy many more years with you.
Love,
MOM and DAD
To see some pix:
www.caitlynchurak.com/indexfiles/photo6.htm


.

HAPPY 6TH BIRTHDAY CAITLYN

Caitlyn had a great birthday yesterday and we loved every minute of it. She has something special planned for the next 4 days. Birthdays can't just last one day. So we will be celebrating till Sunday. Thank you for all the nice messages you have sent Caitlyn she has enjoyed them. I will post some birthday pictures in a few days.
Caitlyn's treatment went well on Tuesday and she is feeling fine. She is a little on the cranky side which is trying on everyones emotions but we just all take a lot of deep breaths and thank God for the moment with her.

Kara

We are not cheated we are gifted

People ask me all the time how are you doing? What I cover up my response with is, "Oh we're doing ok and Caitlyn is feeling good." Because there are no words to explain how you are doing when you know that your child is dying. It is only a short matter of time until all the treatments they have out there will no longer have any effect on her. It is hard for us to wrap our minds around all this when she appears relatively fine. I do see some things personality wise about her have started to change. But to answer the other question we get a lot. I don't know how you carry on? Well we follow her lead she is happy and just wants to have fun so we try and do the same thing. She is here with us now we have to enjoy her. There is no time for sorrow and only private crying. We will have eternity to grieve but a only short time to embrace the now.

This weekend the kids are at my parents house 45 min away in Wisconsin and it is taking all of my energy to not go up their and bring them back home. I miss them so much. But I know other people need to be with her as much as we do. I feel I have grown so much in these past 9 months and have learned to look at things differently. When Caitlyn was diagnosed I was devastated with the thought of losing her and I was feeling cheated. I would not get the chance to experience what I have been looking forward to since she was born, the things that I Cherish the most with my mother and that is a life full of all the wonderful mother daughter experiences. I now know there is more to life then that and that is just not in the cards for everyone. God sent Caitlyn here to touch the hearts of others, make them see a different side of themselves, to make people reevaluate what is important in life. And hopefully with her trial experiences to help the doctors get closer to a cure. That is what I have to remember she was sent here for. To remind myself that God has chosen her as a special Angel to touch others makes my heart feel less heavy and not cheated but rather gifted.

It feels therapeutic to put my thoughts down and know that people care. Please pray for all the angels here on earth that were sent to touch others life's. They have such an important job but it comes at a great cost for the family's who have to let them go to heaven.

Kara

02/27/08

Hello Everyone-
Kara is going to try to post; but with three kids it is hard to get to the computer.

Monday was another very long tiring day at the hospital. Caitlyn and her Dad left early in the morning to get down to the hospital for the MRI. Her Mom got the boys off to school and then met them at the hospital.

The last MRI the doctors saw a slight increase in the tumor but the MRI was classified as stable. This MRI shows additional growth and the doctors are now classifying the MRI as PD - progressive disease.

The good news is that usually when a DIPG tumor starts to grow the growth is very fast and aggressive; but in Caitlyn's case the growth is slow. This indicates that her current treatment protocol is at least slowing the tumor down. Also she is not showing any symptoms that indicate that the tumor is affecting her balance, vision, or reflexes etc.

There is not another clinical trial open at this time, so the plan is to continue on the same treatment plan. The next MRI is scheduled in 4 weeks.

Please pray that God will stand with the family and give them hope in this battle. Please keep Caitlyn, Kara, Jason, Patrick and Jackson in your prayers.

Thank you,
Margaret Donahue

02/20/08

We enjoyed a great long weekend at the Wisconsin Dells. This was our 5th Annual trip to the Dells with my parents and brothers family. This is a trip that we did not think we would be taking this year. It was almost surreal to be playing in the water for three days as if nothing was wrong. What a difference a day makes or in our case 9 months. On February 22, it will be 9 months since Caitlyn's diagnosis. Nine months since we were told she would not be here in 9 months.

She has proven to be a miracle, to be one of the lucky ones. We don't take it for granted and we know that things could change at any time. This is a change we don't want to think about or face. So for now we are rejoicing in the fact that we get to plan a 6th birthday party for her. We are so thankful, that we can spend another day in good health with her; and that we can hug and kiss her without sadness.

Please say prayer for Caitlyn this weekend as she will be going in for her MRI on Monday.

Thank you,
Kara, Jason, Patrick, Jackson, and Caitlyn

02/11/08

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Kara asked me to post for her today. It was after 7p and they were just heading home. Kara said Jason was driving and traffic was not too bad considering the snow. Today was a treatment day, and another long day at CMH. Overall, Caitlyn is doing well. She remains stable and she is still on the avastin/irinotecan trial.

Kara said Caitlyn had a rough day today. She got sick today; but seemed to be doing ok on the ride home. Hopefully it just means the chemo is doing what it is supposed to do. She goes back in two weeks for treatment and an MRI.

Thank you for keeping Caitlyn and the Churaks in your prayers. Please pray that Caitlyn bounces back from this treatment and feels better as soon as possible. Please also pray for positive results on the next MRI. I know Kara reads the guestbook signatures to Caitlyn so thanks also for all the kind notes.

I saw Caitlyn about a week ago and she was doing well. During my visit, she insisted on putting on her Minnie Mouse costume, complete with gloves and ears (see cute pix).

Thanks again for the prayers,
-Margaret Donahue

****If you would like to be notified when this blog is updated please send an email to: update@caitlynchurak.com

02/01/2008

http://www.abta.org/

3rd Annual

Brain Tumor Path to Progress

5K Run/Walk

Saturday, April 26, 2008

Montrose Harbor,

Chicago Race time 10 am

Details about

Team Caitlyn

www.caitlynchurak.com/26apr2008.htm