Journal

2010-04-07T20:21:00.000-07:00

Visit a Lemonade stand

2009-06-27T07:59:00.000-07:00

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

2009-06-17T15:54:00.000-07:00

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!!

2009-03-10T08:16:00.001-07:00

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

2008-12-12T08:31:00.000-08:00

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

2008-12-09T19:27:00.000-08:00

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!

2008-11-08T19:39:00.000-08:00

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

2008-10-09T17:13:00.000-07:00

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

2008-10-02T19:16:00.000-07:00

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

2008-09-29T19:28:00.000-07:00

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

2008-08-31T11:29:00.000-07:00

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.

--------------------------------------------------------------------------------------------

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

2008-08-21T13:25:00.000-07:00

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.

2008-07-28T14:28:00.000-07:00

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

2008-07-17T08:59:00.000-07:00

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!

2008-07-16T21:08:00.000-07:00

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

2008-07-10T08:11:00.001-07:00

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

2008-07-05T11:57:00.000-07:00

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!!!!!!!

2008-06-27T06:36:00.000-07:00

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.

2008-06-27T00:21:00.000-07:00

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

2008-06-25T19:36:00.000-07:00

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

2008-06-19T13:32:00.001-07:00

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!!!!!

2008-06-18T07:51:00.000-07:00

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

2008-06-09T19:06:00.000-07:00

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

2008-06-01T20:50:00.001-07:00

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

2008-05-31T13:45:00.000-07:00

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

2008-05-27T14:18:00.000-07:00

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

2008-05-24T20:33:00.000-07:00

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

2008-05-15T09:53:00.000-07:00

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!!!!!!!

2008-04-28T09:03:00.000-07:00

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

2008-04-25T18:29:00.000-07:00

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

2008-04-22T06:56:00.000-07:00

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

2008-04-07T20:18:00.000-07:00

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

2008-04-02T21:15:00.000-07:00

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

2008-03-26T12:16:00.000-07:00

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

2008-03-20T20:21:00.000-07:00

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

2008-03-13T08:55:00.000-07:00

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

2008-03-08T06:07:00.000-08:00

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

2008-02-27T07:56:00.000-08:00

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

2008-02-20T15:48:00.000-08:00

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

2008-02-11T20:03:00.000-08:00

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

2008-02-01T19:33:00.000-08:00

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

01/24/2008

2008-01-24T07:51:00.000-08:00

Hello Everyone-

There is a petition to have a childhood cancer awareness stamp put in place. Here is a link to the petition, please take a minute and sign it and forward this to all your friends.

http://www.thepetitionsite.com/petition/521710130

Here is the proposal:

As parents whose lives have been forever changed by this disease, we hope that this stamp could be given designation as a symbol for childhood cancer awareness.

By age 20, one child or teen in 330 is diagnosed with cancer. Each year, 12,400 new cases of childhood cancer are diagnosed in the United States. Each school day, 46 children or two entire classrooms of children are diagnosed with cancer. Each day researchers, scientists and physicians come a little closer to finding successful treatments for many childhood cancers, yet approximately 2,300 children and adolescents die each year. More children die of cancer than of any other disease, including asthma, diabetes, cystic fibrosis, congenital anomalies and AIDS, combined.

Motivated by the extraordinary success of the breast cancer stamp, the existence of a "Childhood Cancer Awareness" stamp would serve to promote the awareness of this disease that is plaguing our children.

No parent ever wants to hear the words, "Your child has cancer." Yet one in 330 families in the United States are handed this fate. Please help to promote the necessary advocacy for awareness and research that a "Childhood Cancer Stamp" would provide.

Thank you!

01/14/2008

2008-01-14T12:14:00.000-08:00

The MRI results are in and the doctors are saying the tumor is stable.

They said it was a “mixed bag”, one part of the tumor looked good; and one part showed ½ centimeter of growth but the doctors are considering it “stable”. The growth could be tumor growth or swelling from the new drug. The doctors expect to see some growth in the first rounds of the present treatment -- but ½ centimeter is less than they usually see.

Clinically Caitlyn is good and they are proceeding with her treatment today. Treatment usually takes about 4 hours, so they won’t be home till later tonight. The next MRI will be in 8 weeks.

Thank you to everyone for the extra prayers and positive thoughts. Please continue to pray for Caitlyn and her family.

If you would like to leave a message for the family please sign the guest book:
http://pub41.bravenet.com/guestbook/add.php?usernum=3437245337

Thanks again

01/08/2008 - Happy New Year!

2008-01-08T13:30:00.000-08:00

Well, we made it to 2008. We spent New Years Eve at CMH getting our Chemo. We made it back to grandmas house by 4:30. This is a record for us to get out of CMH. It helped that we were nearly the only ones there. Caitlyn had dinner at Grandmas with her brothers while Jason and I went out for a quick dinner. The snow was so beautiful that evening that the kids and I had fun walking up and down our block in the picturesque snow scene. We also had fun ding dong ditching a few of our neighbors after we sprinkled confetti on their door steps. ( it was only 9pm). They figured out who did it because Jackson went back to tell them who did it. I will never commit a crime with this one.

Caitlyn continues to do well on the outside. Meaning no physical symptoms. It's whats going on inside that has us curious. Is this new chemo working? Will it be our miracle? Well, we will know on Monday she has her next MRI then. So please send some very strong prayers our way. We need a good report. Things look too good on the outside to handle anything less then good.

Thank you for keeping Caitlyn in your hearts and prayers. I'm sorry I don't update as often as I should. But no news is good news. We hope everyone has a good new year. The words thank you are not enough for all that our friends, family, and community has done for our family this past year. When I think back to when Caitlyn was diagnosed I felt a rush of love and compassion that instantly surrounded our family. This came from people whom we knew family and dear friends. It also came from people whom we did not know. That was the most surprising to us. It is so easy to take for granted our live's and the people in them. We do this without intention. It's normal and we all say we want to Cherish life and our families more but day to day life makes that hard. Until something like this hits you and knocks you out of orbit in your own world. This has opened our eyes to the kindness of the world. It is not always easy to see the kindness or the miracles you just have to look at the world in a different way and it is there.

We are moving forward with a new year and new hope that we will have a miracle. For to look back and feel dispair will only make us unable to move. If we are unable to move then we can not see the miracles that each day brings.

Kara

12/22/2007

2007-12-23T20:23:00.000-08:00

Well, December 22nd marks 7 months since Caitlyn was diagnosed. We were told she had 6 to 9 months to live. They say the holiday season is a time to reflect on the past year and be thankful for all you have. Well, I never truly lived those words until this year. I sit back and think of the roller coaster ride we have been on since May 22nd and I am so thankful that none of us has fallen off the ride. It has been trying on our faith, hope, and courage. Of course we are thankful that Caitlyn is still with us however we could not have gotten this far if we had not been given the gift that we were not even aware of needing. That being the strength to continue to live, while faced with the unthinkable. That is truly a gift from God. With out the courage and faith that God will lead us where we need to go we would be lost.
Caitlyn is doing well, we are having a great holiday season. The kids are having fun and the fact that Caitlyn is doing so well makes everything seem normal. Last Monday she had another round of her Chemo and is doing well. Other then a rash on her arm where the injection is and some nausea for a few days after treatment she is handling it well. Of course I always wonder about the drugs we are putting in her body and is it doing more harm then good since it is a trial. However it is giving us precious quality time with her and clinically speaking she is doing great. She will have another MRI January 14th. I no longer look forward to the MRI's as they can only bring your hope down. I look at her and I feel positive, hopeful, and courageous because that is what SHE IS showing me.
All of this has changed the way I listen to the world now. Since cancer has happened into our life's our world is so much quieter now. I can hear things that I did not hear before. I guess that is the gift cancer has given us. It will not beat us and tear us apart it WILL make us stronger even if that is not what it had planed to do.

I hope everyone enjoys their time with their family's this Christmas I know I will. Have a Merry Christmas.

Kara

12/04/2007

2007-12-04T14:18:00.001-08:00

The holiday season is here and we started it off in the best way. The day after Thanksgiving, my mom and I took the kids to Idaho. Jason stayed behind in the real world, worked and did many unfinished chores. He surprised us with A LOT of honey-do tasks around the house (ie... He got the Christmas lights up outside, Caitlyn's room got a new paint job, tv room got a new paint job, and the bathroom got some new tile). He worked hard at home and we appreciate it.

We had a GREAT time in Idaho. We visited relatives and showed the kids the beauty of the mountains. For those of you who don't know where Idaho is it is on the west coast between Montana and Washington state (not Washington D.C which I am sometimes asked). The kids had fun meeting all their second & third cousins and seeing their grandparents & great grandparents. It snowed while we were there and the boys loved being able to sled everyday. Caitlyn went out and down the hill a few times too. Patrick even tried sticking his tongue to the flag pole --thank God it didn't stick.

The plane ride there and back was perfect ( No delays and there were even open seats). It was like it was all meant to be. We had to make connections both times so the boys were excited to sit by a stranger. My mom, Caitlyn and I were always behind or across the aisle. Caitlyn said to me, "Mom I thought you told the boys to never talk to strangers." I told her it was ok this time because I was right there. Also I felt more sorry for the stranger. Actually everyone they sat by told me what nice boys I had. Except the last person on the way home, I don't think he liked the water they dripped on his book while they were handing the stewardess their drinks.

Caitlyn is doing well. She did get sick in Idaho a few times but the doctors are not sure what it is because she looks so good. She has no other symptoms so we think it is a side effect from the chemo. She had her third round of chemo yesterday it was a very long day. She looks very tired today and I have finally coaxed her into taking a nap.

We are taking it one day at a time. We Thank God for each day we can live normally and it's what get us to the next day. So back to small steps and little planning. We just pray for a healthy and symptom free holiday. The kids will all be in the Christmas pageant - Patrick one of the Wise Men, Jackson a Shepherd and Caitlyn --what else an ANGEL.

God bless everyone this holiday season and thank you for all your support and prayers. The lives that Caitlyn has touched are brought to our attention everyday in some small way. We would like to thank the Wiltgen family and the Laning family for sharing Caitlyn's story with so many people. Carole Laning touched so many people and that is showing now through the support that Caitlyn is receiving through the people who cared about Carole. Thank you.

Have a blessed and safe holiday season
Kara & The Churak Family

11/20/2007

2007-11-20T19:13:00.000-08:00

(11/18/07 - A Princess meets Daisy Duck)

Hi Everyone

Just a quick post. The Churaks are going out of town the day after Thanksgiving so things have been a little hectic between daily life, doctor visits, laundry, and packing.

Caitlyn is doing well. She had two very long days at the Hospital this week. Monday she had her second dose of Avastin; and today she had her first dose of Irinotecan -- both via IV drip.

Caitlyn also had a MRI yesterday. It was the first MRI where she was not sedated. Kara sat in the room with her and Caitlyn watched her for awhile -- but then she fell asleep and was able to lay still for the whole 90 minute MRI. Is this not an AMAZING girl!? She is a lot braver than I am that is for sure. She even impressed all the nurses on the floor.

Please continue to pray for the Churak family. Pray that Caitlyn accepts the new medicine without side effects. Please also pray for the other families battling DIPG and other illnesses especially Katie Metz (www.carepages.com "katiemetz") and Natalie Rose Jones (www.caringbridge.org/visit/natalierosejones)

Please also pray for all families traveling this holiday.

Have a Blessed & Happy Thanksgiving!

-Margaret Donahue

11/05/2007

2007-11-06T06:43:00.000-08:00

Today Caitlyn had the first part of her dose for the new trial Avastin. She seems to be tolerating it well. No side effects yet and hopefully not any later as well. On November 19th she will get her dose of Avastin and Irinotecan. The combination of the two of these drugs are or we hope more effective then just the Avastin. Alone we know does not work on it's own. The Avastin is supposed to cut off the blood supply to the tumor and the Irinotecan is supposed to tell the body to not try and repair itself. Let's pray this works.

We continue to live for each day that is in front of us. It is not easy I have to constantly tell myself "be happy for today. Today she is feeling good and is healthy". It only makes the pain hurt more when you think about the future and try and plan for Christmas and Thanksgiving and think "will she still be healthy then?" So that is why we have already bought our Thanksgiving outfit and have already worn it twice. My suggestions to all moms that see this posting. If you already have your children's holiday outfits, let them wear them now and when ever they want to. It is a very freeing feeling to let go of all those restrictions we put on ourselves that go along with planning.

Please continue to pray for our family and all other family's that are going through an illness with a loved one.

Kara

There are two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

11/02/2007

2007-11-02T18:05:00.001-07:00

We received Caitlyn's MRI results late yesterday. The test showed no enhancement of the tumor. This was a great relief after the last two MRI's were not what we had hoped. That being said, she is eligible for the trial with Avastin and Irinotecan. We will start this Monday. She will have an IV infusion every 15 days. Please pray that the side effects are manageable for her body and that this works for her.

As a lot of you may know we have been anxiously researching any and every treatment that Caitlyn may benefit from. We have been following leads that people are sending us. Here is where we are with that. Several people told us about Dr. Spetzler who operated on a local girl with an inoperable tumor. Her story was in the Daily Herald. We contacted the doctor and sent scans for him to review. He called us back to tell us he could operate on part of her tumor; but he could not remove the whole thing. Our doctor even talked with him. Unfortunately this is an all or nothing situation. Removing part of the tumor is of no use -- because the type of cancer is very aggressive and will only grow back.

We have also looking into a couple different clinics and institutes that claim to have a cure; but they show as much success rate as the clinical trials we are looking at. I do believe diet is a very big part in trying to cure cancer but it is easier said then done to get 20 different vitamins down a 5 year old. Or juicing 20 pounds of vegetables a day. We have to think about the quality of life and her happiness. She is so happy everyday and I don't want to take that away from her. We are working with a nutritionist to see if they can help us sort all of this out.

Thank you for all your support, prayers, and for trying to find a cure for our daughter. It means so much to know that people we know and don't know care so much.

Kara

10/29/2007

2007-10-29T20:05:00.000-07:00

First I want to start off by thanking Dobby's for the wine tasting. I was not able to attend. With Caitlyn's treatment plan up in the air I'm finding it hard to go out and be normal. I really wish I could have been there. I was told it was a great turn out and everyone I talked to said they had a great time. The wine was great and the food was wonderful. Thank you for everyone who helped with this event. Thank you to Dobby's, Jerry Kohn, Jean Dziedzic, and the local restaurants for the food (Durty Nellies, Lamplighter, Heng Weng, Artisitc Cuisine, & Siri Thai). Also thank you to Bob & Sharon, Margaret, Cindy, & Geri for attending in Jason and my place. Also Amy and Tom Barker did a great job on the flyer -- thank you.

Well a lot has been happening in the past few weeks since we have learned that we need to pick a new treatment plan. We have been really struggling with which experimental trial to pick. It is so hard because none of them are a cure. Nothing has really shown any success -- the reason being that they have not found a way to break the brain blood barrier. We are researching some homeopathic treatments. It seems that the few kids I have found that are alive past one year are doing some type of homeopathic treatment. We have to decide by Wednesday what we are doing. That is the day she is going into Children's to do another MRI to see if the tumor has any hemorrhaging. She can not have hemorrhaging if we want to put her on the Avastin and Irinotecan trial. We think her MRI will come back clean and are not worried about that.

If anyone has any info on the Avastin/Irinotecan trial please email us (info@caitlynchurak.com). It is in Phase 2 so there should be some DIPG families out there.

In the meantime we are living life to the fullest. Last week Caitlyn was treated to a limo ride downtown by her to best buddies Olivia and Caleigh. Of course us mom went along too. We arrived at the American Girl Doll store and had lunch with our dolls. Then we took the dolls on a shopping spree. Yes, I know what your thinking....I never thought I would get caught up in this cult but I have. I still think it is a little strange; but Caitlyn loves it. We took the train home and had a great day.

Friday we went to a Wolf Hockey game and the kids had a great time. Then Sunday Uncle Jimmy treated the kids to a Bears game front row seats behind the field goal. They all had a blast.

Caitlyn has been wearing her Minne Mouse costume around for the last few weeks since we kind of thought she might be in the hospital on Halloween. That is the day she will be having her MRI so she will miss trick or treating. Today, Lynn Klein had a Halloween party at her house with some of the girls from school. She asked her neighbors if they could pass out candy on Monday when the girls from the party came around. They had such a great time and Caitlyn won't feel like she missed out. After that we went to her Godmothers house Susan, and had another party with a pinata which is Caitlyn's all time favorite.

Thank you to all our friends and family that are helping all of us through this tough time. You have no idea how the littlest thing you do makes such a big different in someones life. There are tons more that people are doing and we want recognize all of them. From meals, helping with photos, just coming along and having fun with us, cards, emails, prayers, people are always sending us any info that they think might help us in this fight to save our daughter. Please know that we do notice it all. Even if we don't seem like we do. We just have so much on our minds right now. Somedays I can't remember why I walked into a room. So if we haven't acknowledged you please know we are grateful.

Please say a prayer for Mrs. Held who just lost her mother. She was Jackson's first grade teacher last year. She has held us close to her heart since May and we appreciate it. Also please say a prayer for the Wiltgen/Laning family who unexpectedly lost a member of their family. The Wiltgen/Laning family have been praying for our family since May as well. We are truly saddened for the loss of these family's loved ones; but it gives me comfort that there are two more angels in heaven looking down on us.

Thank you for touching our lives.
--The Churak Family

10/22/2007

2007-10-22T20:51:00.001-07:00

I just wanted to let everyone know what is going on with Caitlyn's treatment plan.

I guess we will not talk to Dr. Goldman until after his next meeting this Thursday. She is not able to start a new trial until she has been off medicine for three weeks --Which will be next Wednesday. Caitlyn is still doing well and we are reviewing all the different trials. There are about 4 or 5 that we are looking at. Unfortunately there is not a lot of info available about how they would work with this type of tumor, although they have worked well on other cancers.

We are still staying positive and trying not to let the diagnosis ruin our lives or our happiness. The good and most important thing, is Caitlyn is having the time of her life. We are doing so many girly things and just living life. She has no idea what the doctors are saying and I thank God for that. She sees everyday as a new opportunity to have fun and love life. She tells me, "I love Kindergarten. It is so much fun, and I love all my friends".

I ask her everyday if she wants to go to school or stay home with me. She chooses to live life with out a second thought. And she REALLY loves helping me with market day. Last Tuesday she said " Mom I love working with you it is so much fun, and we get a surprise at the end. This is the greatest". If we could only take the time to learn from our children and not think that WE always have something to teach THEM. Maybe they could show us how to be happy in our darkest times. I know this is easier said then done. But wouldn't it be great if we could?

Please continue to pray that we are granted more quality time with Caitlyn. Please also pray for the other children who are sick or who have lost their battle. Please pray for their families as well. I know I pray for those moms and dads every night.

Kara

10/16/2007 - MRI #3

2007-10-17T20:10:00.001-07:00

Caitlyn's tumor has grown about 30% in the past 12 weeks.

We spent some time talking with Dr. Goldman last night after her MRI. We looked at the scans and could see the growth. Dr. Goldman did say on a good note, that from the measurments it appears to be growing slowly. This means that the Zarnestra is keeping it at a slower pace; because normally when this tumor shows re-growth it just explodes.

Now Jason and I start the process of reading through our options of other trials. The brain tumor consortium is meeting this Thursday and our doctor will be there to discuss our options. We hope to have a new plan of attack by the end of this week.We continue to fight for our daughter's life, and know this battle will not be easy. We have to stop the tumor from growing anymore. We recognize that the only way to really stop it from growing is with a cure--and currently there is no cure for this type of tumor.

That is why, I ask you to read the link to curesearch.com (below). Learn what you can do to make sure the Conquer Childhood Cancer Act gets passed. There is not enough research being done and funding has been cut.Thank you for all your support and prayers. I have learned to wish and pray for small miracles while I'm waiting for the big one. So for now we pray that we will find a cure with our next trial or at least another 5 months of quality life for Caitlyn before we have to try something new. I will post again when we know what our next step will be.

The Churak Family

10/16/2007 - Conquer Childhood Cancer Act

2007-10-16T21:22:00.001-07:00

The Conquer Childhood Cancer Act

Do You Have Five Minutes?
That's all it will take to learn the issues and send a letter to your elected officials. The actions of our government have an enormous impact so please educate yourself and take action. Please take the following actions: Send a Letter to your elected officials and tell them to pass important legislation that we are following for you.

You can look up represenative and email them directly online at:
http://www.capwiz.com/curesearch/home/

The online form letter is:

Dear [recipient name was inserted here],

I am writing to thank you for your support of the Conquer Childhood Cancer Act HR 1553. This legislation is an important step in the fight against childhood cancer.As you know, everything we know about childhood cancer has been learned through research. The money authorized in this bill, $30 Million every year for the next five years, will allow pediatric oncology researchers to investigate critical questions about childhood cancer and to translate these findings into life saving treatments.

There has been a lot of progress in finding cures but sadly, cancer remains the #1 cause of death by disease in children. I am pleased that you are a leader in this effort. The children in our district and across the country deserve the very best that scientific research has to offer. Thank you again for using your elected office to be a voice for children with cancer.

Sincerely,
[you name here]

Conquer Childhood Cancer video:

www.youtube.com/watch?v=AGS4yE5v9rM

10/15/2007

2007-10-15T19:42:00.001-07:00

The results of the 3rd MRI indicate that the tumor is growing. Please respect the family's privacy as they meet with doctors to determine what the next step is.

The family appreciates all your ongoing support. Please keep Caitlyn and her family in your prayers in the days ahead.

More info to be posted soon

Thank you,
-Friends of the Churak Family

10/18/2007 - Wine Tasting

2007-10-13T07:41:00.000-07:00

Date: Oct 18, 2007 (Thu)
Time: 6:30 PM - 9:00 PM
Cost: $10.00

Place:
Dobby's World Wide Wine & Liquors
15 S. Brockway
Palatine, IL 60067

Taste wine, savor delicious hors d'oeuvres from local restaurants -- Lamplighters, Durty Nellies, Heng Wing, Artistic Cuisine and Siri Thai,

Portion of proceeds will be donated to the Caitlyn Churak Medical Fund.

10/10/2007

2007-10-05T07:46:00.000-07:00

We seem to be a lot more busy now that school is in full swing; and I don't seem to find the time to post. Caitlyn is still doing well. I can not tell you how lucky we feel that she is doing so good.

I am sad to say that three more angels have received their wings. Hannah Deals, Trinity Bright, and Sophie Quayle. All three were also diagnosed with a DIPG tumor just like Caitlyn's. I try not to follow too many cases because they all seem to follow the same path. It hurts just as much as if it was my own when we lose another child to this. Please say a pray for these familes.

Caitlyn will have another MRI on October 15th to determine if the tumor is growing or dying, but for now she is feeling well and that makes us all very happy.

The boys are doing great and loving 2nd grade. Caitlyn is loving Kindergarten as well. Everything feels like it supposed to for now and that is something to be grateful for. We just want to thank all our family, friends, school, parish,and community for the continued support.

You all continue to show us that Caitlyn has touched your lives in some way. Our friends that helped with the fundraiser on September 23rd -- continue to receive calls from people in the community that want to contribute to the next fundraiser or who want to give a gift to Caitlyn.

This is way beyond the impact that we expected to have. I know God knew what this would do to the community. This is just another example of why we must always be listening because you never know when He will be talking to you. Please continue to pray for Caitlyn and the other children.

The Churak Family

******Thank you, Thank you, Thank you

Many thanks to St. Theresa School for the dress down day donation. The student Council designated an out of uniform day in September for Caitlyn. This made Caitlyn and her brothers feel very special. I am so proud of the STS children. They have such compassion for one another. When I come to the school to help out in the classrooms I'm always asked by the other children how she is doing. That says a lot for 7 year olds and 5 year olds.

Thank you also to St Thomas of Villanova who so generously donated proceeds from their bake sale and out of uniform to Caitlyn's medical fund. Thank you to Quest Academy who thoughtfully gave a gift basket to the family, and a gift basket to each of the kids. The kids looooved everything. We appreciate your genorosity, thoughtfulness, and kindness. It means a lot that other schools in the community care enough to think of us.

Thank you again for keeping us in your hearts.

09/26/2007

2007-09-28T04:46:00.001-07:00

What Cancer Can't do

Cancer is limited
It cannot cripple love,
It cannot shatter hope,
It cannot erode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot steal eternal life,
It cannot CONQUER THE SPIRIT!

THANK YOU FOR YOUR SUPPORT
-The Churak Family

What a turn out on Sunday---We had close to 500 people attend the fundraiser. We can not tell you how much this touched our hearts. The words Thank You do not seem like enough to express our appreciation.

You know who you are, but I'll say it anyway Margaret, Cindy, Susan, Jean, Jennifer, Carrie, Amy & Tom, Vicky & Ken, Nancy and countless others. You did a GREAT job. If you guys did medical research the way you organize a fundraiser I know I would sleep easy every night.

Thank you for bringing a community together to give a 5 year old girl a day she will never forget. Caitlyn had such a good time! Since diagnosis (4 months ago), Caitlyn has received more love and compassion from everyone -- than some people see in a lifetime. This has helped Caitlyn's attitude and made her feel so special.

I read about other children battling this disease and their stories changed my life. The day Caitlyn was born she touched the hearts of her family; and I am so thankful that she has been able to touch other people's hearts as well. People tell me everyday how her story has changed their life. They appreciate family more, they try not to take things for granted, and the time they spend with their children is a little more precious. I know everything happens for a reason; and if what has happened to Caitlyn makes people appreciate life more then that is one positive outcome.

Caitlyn is still doing well, but we can never forget that the road can change at anytime for us. We still pray everyday for Caitlyn and continued good health. We pray for a cure so that Caitlyn and all the other BSG kids are able to grow old and live life without the fear of cancer.

We will post some pictures soon.

Please see all the people that made the fundraiser possible:
www.caitlynchurak.com/indexfiles/thanks4.htm

Pictures:
www.caitlynchurak.com/indexfiles/photo4.htm

Thank you and God Bless,
The Churak Family

09/09/2007

2007-09-28T04:38:00.000-07:00

Thanks to everyone who showed up and rode at the Cruizin for Caitlyn event. It was amazing to see so many people turn out for the event. The kids had a great time and looooved all the motorcycles.

Thanks to Possum Pub for hosting the event. Huge thanks to Wally & Tracy, and Mary Ann.. Thank you for your genorosity, thanks you for attending and thanks to Mark "Flashback" Lorence.

Pictures to be posted soon.......

09/18/2007 - MRI #2

2007-09-18T19:48:00.000-07:00

We have received the results from Caitlyn's MRI that she had on Monday.

They are not as positive as we were hoping for. Although they still show hope. The tumor has increased in size by 20% and the tumor mass has changed form. Dr. Goldman says the results are not conclusive as to what the tumor is doing. The tumor shows a change in mass form. Before it was a solid mass. Now it is like a misshaped wedding band. There is a black mass with a white band around it. This can mean one of two things -- the tumor is dying or the tumor is growing. They want to watch her closely and do another MRI in 4 weeks. They feel with the next MRI they will be able to tell us for sure if it is dying or growing.

Caitlyn still remains symptom free. She is showing signs of fatigue and irritability. Which can be a sign of tumor re-grow or it could mean she is just tired.

We will continue to pray that this is going in the right direction and put this in Gods hands because that is all we can do for now. Please continue to pray for Caitlyn. We would like to thank everyone for your out pour of thoughts and prayers for Caitlyn. You all have made her feel so special.

Thank you.
The Churak Family

09/17/2007

2007-09-16T19:07:00.000-07:00

Hi Everyone --
Please say a prayer for Caitlyn and the Churak family today.
Today, Caitlyn has her 2nd post radiation MRI. Caitlyn is still symptom free; so we pray that this MRI scan shows that the tumor has shrunk even more. Caitlyn has defied odds so far; so we continue to pray for miraculous things! Results will be posted tomorrow (Tues).
Thank you and God Bless
The Friends of Caitlyn Churak

09/08/2007

2007-09-08T06:12:00.000-07:00

Hi Everyone --

This is just a reminder of the 9/23/2007 fundraiser for the Churak Family. The event will take place at Durty Nellies in Palatine from 3p-7p. (www.durtynellies.com/directions.html)

This is going to be a day of fun for friends and families (kids are welcome). We are going to have live music, kid's activities, and a special appearance by Miss Illinois. Food and pop are included and there is a cash bar.

Many people and businesses have donated GREAT items for the silent auction and raffle -- we have over 50 raffle / silent auction items so your chance of winning is good. Please feel free to bring friends, family, and neighbors to show your support for Caitlyn ---it is going to be a fun event.

You can pay at the door the day of the event or online at: http://www.caitlynchurak.eventbrite.com/.

Miracles Happen Everyday and with your help it can be Caitlyn

Thank you and God Bless

Friends of Caitlyn Churak

08/30/2007

2007-08-29T20:50:00.000-07:00

I am sorry for the lack of updates. I have been trying to stay away from my computer since Caitlyn finished her radiation treatment. I get too caught up in searching for a cure and never seem to find one.

This as you can imagine puts me in the wrong state of mind. Feeling overwhelmed with sadness and unable to enjoy the miracle that we have been given. We have been so lucky to have Caitlyn back to good health. The cancer is still there but they have been able to make the tumor shrink which has relieved her of her symptoms. How long this will last....is too hard on our hearts for us to even think about. So we have to enjoy the good times that we are blessed with. I will make this a positive and uplifting update.

Here is a list of things that I am thankful for today.
-Caitlyn is going to school with her brothers. We did not think we would see this day. She loves seeing her classmates from 3yr old and 4yrs old preschool. She looks so darn cute in that uniform.
- I look forward to Halloween with the kids and seeing them in their costumes running from house to house trick or treating.
- I look forward to the family running the Thanksgiving Turkey trot.
- I look forward to seeing all three kids for the first time together in the Christmas pageant.
- I look forward to the boys first communion.
- I look forward to all three kids for the first time together in the spring musical at school for the K-3 graders.
- I look forward to looking forward to tomorrow. Because with her health stable I can not allow myself to dwell on what this cancer has in store. I have to believe she will be different she will be a miracle.

Thank you so much for all the emails and guest book signings. It has been nice to see so many of you back at school. We have met so many new friends this summer. People that have come to offer support and comfort. It has meant so much. So many of these people have had suffering of their own; and shared their stories with me. Meeting these women (a.k.a moms) has made me see that I can survive this, as unsurvivable as it seems. I believe I have met you all for a reason. You know who you women are. I want to thank you from the bottom of my heart.

Please continue to pray for Caitlyn and all the other sick children. I know we are not the only ones. I do believe your prayers are working.

Kara

08/29/2007

2007-08-28T19:35:00.000-07:00

Hello Everyone-- Kara asked me to post today. The kids started back to school last week and it has been a busy couple of weeks. Caitlyn is still doing well. She is very excited to be starting Kindergarten.

With summer winding down and school back in session; the family is trying to get back on a school schedule, and return some degree of normalcy back to their life.

Caitlyn has her next scheduled MRI on 9/17/2007. That being said, these MRI's cause a certain amount of anxiety. Please keep Caitlyn & her family in your prayers and pray that this scan confirms that Caitlyn is continuing to defy odds

Thank you and God Bless
Margaret Donahue (friend of Churak family)

8/14/2007

2007-08-14T10:17:00.000-07:00

We have been working on settling back into a schedule this past week in preparation for the start of another school year. It has not been easy as I'm sure you all are experiencing as well.

Caitlyn and I had a wonderful time at the fundraiser on Monday. Her God Mother Susan put on a very elegant ladies night out at Francesca's of Barrington with the help of Christina Currie. We were surrounded by so many caring moms it was a pleasure to meet all of you. Caitlyn wore her Belle dress that she got in Disney along with the crown and looked just like a princess. She had such a great time I truly enjoyed watching her face glow with happiness all night long. Thank you Susan, that event had you written all over it.

Thank you to Susan Buerckholtz and the other moms that helped her with the bake sale. I'm sorry I missed it. It sounds like you all had fun. Thank you.

Thank you to Anne Koehlinger from STS who worked hard this summer selling flower pens for Caitlyn. It was nice to meet you.

Caitlyn is really looking forward to starting Kindergarten this year. We are really excited that she will be starting the year feeling so good. She is still doing very well and we hope this miracle continues. She will be taking a break from her chemo pills this week and then will go back on it for another 3 weeks straight. She will continue the protocol where she will be on for 3 weeks then off 1 week; with each cycle increasing her dose. With each new cycle we pray she will continue to tolerate the medicine/treatment.

Thank you everyone for your prayers and support.

The Churak Family

8/08/2007

2007-08-08T07:14:00.001-07:00

We are back!!! We had a great time. The kids loved Disney.

I don't know if any of you know about Give Kids The World. It is an organization that is based in Kissamee Florida. It helps children with life threatening illnesses fulfill a dream. If you are ever looking for an organization to support there is more info available at:

http://www.gktw.org/
http://www.wish.org/

Caitlyn is doing great!! She enjoyed Disney soooo much. She got LOTS of autographs from all the Disney characters. Thanks to the Make-a-Wish foundation, the whole family was treated like royalty. We were all made to feel so very special. Every character she met and every Disney employee she encountered greeted Caitlyn with extra love and attention. It was enough to make her mom and dads' eyes water the first couple of days. We cannot thank Make -A-Wish and Give Kids The World enough!

Our trip at Disney was followed by a trip to Coco Beach where we spent some time on the beach and in the pool. The boys tried surfing and did quite well at it. Caitlyn made sand castles and collected sea shells with mom.

Caitlyn is doing so good it is hard to believe just a little over two months ago she was given only 6 to 9 months to live. Once we got home from our trip I realized I had gone at least one whole day where I did not think about her illness. I had forgotten it. She looks so good you would be knocked over if you just met her and I told you about her serious condition. It just does not seem possible, since she shows no signs of this horrible cancer.

We returned on Sunday; and I took her on Monday to Children's for her routine appointment. I was able to see her MRI. I could not believe the difference in size between the two pictures -- her first MRI to her latest one. There was some white spots in the middle of her tumor. I asked the doctor what those were. The attending doctor at the time responded with, "They might be blood vessels or dead cells". They can not tell for sure without a biopsy -- which of course they cannot do because of the tumor location. I just have to believe that it is dead cells; with the way shrunk and her great improvement. Only time will tell, but I feel she will be a miracle.

Please continue to pray for Caitlyn I do believe it is working. I just know she is going to be that two percent we are praying for that comes through this. We still have a long way to go but at least we have a good today to help us through til tomorrow. That is all we can ask for on a journey like this. With every good day that we have, it opens our hearts up more to all the other children who are suffering and their families. Thank you and God Bless you for all your prayers and support.

Please don't forget the other children who are suffering as well. Please say a special prayer for Trinity Bright http://www.caringbridge.org/visit/trinitybright

I will try and post some pictures soon.

The Churak Family

07/27/2007

2007-07-27T06:57:00.000-07:00

In two hours a white stretch limo will pick us up to kick off Caitlyn's trip of a lifetime. A trip that she has been granted by the Make-A-Wish foundation.

We will be making some great memories on this trip. We are going to Disney World and then on to Coco Beach to watch a rocket launch at Cape Canaveral. Patrick and Jackson are really looking forward to the rocket launch to Mars. Caitlyn can't wait to meet Cinderella. All the kids are so excited and having been talking non-stop about our big adventure.

Thank you for all the prayers that continue to come in. Thanks to all the things that our friends and family have done and are doing for us. We truly feel loved and lucky that Caitlyn is doing so well right now. Please pray that she continues to respond to treatment.

Thank you,
The Churak Family

07/24/2007 - MRI #1

2007-07-24T13:36:00.000-07:00

This is hopefully the first in many MIRACLES to come our way

Caitlyn's tumor has shrunk by 75%.
The size of tumor at diagnosis was 4.4 x 4.3 x (i don't have 3rd number).
The tumor is now 2.8 x 1.77 x 1.6.

People who know anything about diffuse intrinsic pontine glioma know that this is good news; because so many children don't even respond to a treatment protocol.

Caitlyn is defying the odds and this alone is a MIRACLE. Please pray that the tumor continues to shrink. We still have to get rid of 25%. Any cell left is a cell that can grow back.

THANKS FOR ALL YOUR PRAYERS. THANK YOU GOD, THANK YOU!!!

The Churak Family

please click below if you would like to leave a message.

07/17/2007

2007-07-17T20:13:00.000-07:00

A few of Caitlyn's Angels

Caitlyn had her appointment with Dr. Goldman today. She is still doing good, and still symptom free. She seems to have a little runny nose but the doctors feel it is just a cold and not a symptom of the cancer. Her steroids were cut down to just a quarter of a mg. We will watch her this week; and if she does good then Monday we will take her off it all the way.

Dr. Goldman says she looks good; but after biting my tongue for 6 weeks I had to ask the question that I know he does not have an answer for, "Since she is symptom free does this mean she will be cured?" Of course he did not have an answer and how could he. This is something only time will tell.

I know there are many people like me who search the internet for information about pontine glioma. I know there are parents who travel the country looking for treatments with a promise of survival; and sadly for this type of cancer there are none.

Despite this, there are some doctors that can make even the worse situation feel better; and then there are some (way to many) who can make the worst diagnosis feel very dark and lonely. Since May 23rd, we have had our share of doctors who have made us feel like we were in such a dark cave of despair.

The sadness was truly unbearable; until we met Dr. Goldman. He has told us the same thing the other doctors told us--but with a compassion and sensitivity that made hearing the news from him easier to take. If there is anyone out their that is looking for treatment options. I know I have read a few sites where people are searching . I would recommend seeing Dr Goldman. He can't tell you anything different than the other doctors; but the way he delivers information and the manner in which he cares for children makes all the difference when you are looking at these type of survival statistics.

We have seen Caitlyn's Angels in Action in many different forms

Caitlyn's coins continues to bring in donations from people who are made aware of our situation by Liz Meyers. These people do not even know us but are moved by Liz's compassion for others. I believe their generosity is a testament of gratitude for having Liz in their lives. Liz you are truly one of Caitlyn's angels !

Thank you to Katie, Sarah , Abby, and Julia . For their hard work at their lemonade stand to raise Coins for Caitlyn (see pix above). Children truly are Gods Angels here on earth. Katie, your kindness to Caitlyn has been seen many times this summer. I'm sure your parents are very proud of your compassion for others.

Another act of kindness came from Kathleen Finis and all her helpers. Our families have never met but we attend the same school. They were touched by Caitlyn's story and decided to have a bake sale with 11 kids and their parents from the neighborhood. Thank you for your thoughtfulness, prayers and compassion.

Thank you to St.Theresa for your donation. We were truly touched that you choose our family for the donation. Thanks.

Thank you, Thank you, Thank you again. Thank you all for caring. Thank you for your prayers. Thank you does not seem to be the right word to express our gratefullness; but please know our hearts are truly overwhelmed by your kindness.
When we started this web site it was established with the intentions of making our daughter known to the world. We were devastated by the news of her diagnosis along with it's very grim prognosis. The first thing that came to mind was she has not been here long enough to make her mark on the world. I just knew she still needed to touch so many more lives then just her own family's. With that in mind I asked my friend Margaret to start a web site for her. I wanted Caitlyn to touch the hearts of other peoples jut like she has ours. We just couldn't let her go without making an impact on other peoples lives.

I am touched daily by the impact that she is making on other people. Each and everyone of you who visit this site to follow her story, pray for her, contribute to her fund, or send her site to someone you know, are proof that this world is not desensitized by human suffering. Everyday we hear about violence and hate in the world; and it is so nice to know that there is still compassion for friends and strangers in the world. For me that is a very comforting while our family is on this journey that is so uncertain and to say the least terrifying. You have all helped us keep our faith in God and mankind and hope for a miracle high. We could not do this without ALL of you.

Please pray that Caitlyn stays symptom free now that her radiation is completed. This is the next critical step. The medication and radiation we believe have had a good effect on her since she is symptom free now. Her next MRI is Monday; and we will know more then.

We ask that you continue to pray that everything continues to head in the same direction that it is now. We also ask that you pray that Caitlyn gets over her cold and stays healthy and strong. Keep praying for a miracle for Caitlyn!

The Churak Family

07/12/2007

2007-07-11T19:53:00.000-07:00

Today was Caitlyn's last day of radiation.

When you have big days in life it is important to dress for the occasion, so Caitlyn decided to wear her best dress and tiara to her last appointment. She caused quite the excitement at the hospital. She was a celebrity; and we were the paparazzi! See the photos at:
www.caitlynchurak.com/indexfiles/photo2.htm

For the past six weeks, Kara (and grandma Sharon or Dad and sometimes the boys) have been driving 2 hour a day to and from Palatine to Children's Memorial / Northwestern Memorial hospital, so they are all happy as well that radiation is coming to an end.

Please keep Caitlyn in your prayers, as she begins the next step of her treatment plan. Since this journey began, the Churaks have made some new friends. One of them is Chet Hammack. He is the grandfather of Aidan; also diagnosed with brain stem glioma. Aidan's site is: www.whynotaidan.com . Although the families have not met; Mr Hammack has responded to questions via email and been a support to the Churak family.

Kara asked that I share this email with all of you. She is posting this email so if other families are wondering what to expect when radiation ends they have an idea. Doctors tell you; but families that have been there are the real experts. Read below and remember to keep Caitlyn, Aidan, and all the other BSG children in your prayers!

--Margaret Donahue (friend of Churak family)

===================================================

Kara,
Feeling nervous about the radiation treatments coming to an end is very very common and we too experienced it. Upon treatments ending the first thing we thought is… the treatments had made the situation so much better, and now we are doing nothing to help the situation at all. Well, we were wrong and we were concerned about nothing. Eventually we were told by the doctors that the radiation continues to do it’s thing for up to 6 to 8 weeks after the treatments had ended. We were also told not to get overly concerned if some symptoms reappear or actually worsen slightly during this 6 to 8 week period. Apparently the radiation actually causes swelling of the pons, and this effect continues for some time after treatments have ended. Fortunately Aidan never had any worsening of symptoms so our worries were diminished more then most. But, being the worry warts we are, we then begin to worry that he was not having symptoms, so the pons must not be swelling, and radiation must not be doing what it was intended to do. Can see where I am headed with this? The fact you love Caitlyn means you will most probably worry about her and her cancer from now on. The goods news is that the periods of time that you will not be worrying will grown in length, and the length of the times your are actively worrying will shorten. You can trust me on this because I have been there, and a year and three months later, I worry for Aidan each and everyday, but each day is better then the previous.

We were told a very important thing by Aidan’s Nurse Practitioner and it is something that may help you during the times the worries start to take over. Cancer symptoms do NOT come and go and remain constant at all times. The symptoms are due to the pressure the pons is putting upon the rest of the brain and this pressure does not come and go. If Caitlyn coughs it is most likely NOT because of the cancer, but it is because something has tickled her throat. If Caitlyn appears slightly more wobbly in the evening it is most likely NOT because of the cancer, but it is because she is tired and needs some rest. When you begin to get nervous, step back, take a deep breath, and consciously survey the situation and then determine if your nervousness if based upon sound reasoning. You are Caitlyn’s Mom, you will know whether your worries are for good reason or not.

Since I have already provided you a ton of advice you have not even asked for, I guess I will let my fatherly instincts provide you with one more thing… I don’t know you and I obviously have no idea what your beliefs are, but I have a story for you that you may find very hard to believe, but I will give you my word every bit of it is true….

Within a couple weeks of Aidan being diagnosed my wife was approached by a man at a fundraiser. She did not know this man and at first was a bit uncomfortable. The stranger nervously introduced himself and then quietly reached into his wallet and handed my wife a very small, well worn piece of a newspaper. On this newspaper clipping was the following:

Say this prayer nine times a day for nine days and then publish. You will then be provided your miracle.

May the sacred heart of Jesus be adored, glorified, loved, and preserved throughout the world now and forever.
Oh sacred heart of Jesus, pray for me.
Saint Jude worker of miracles, pray for me.
Saint Jude helper of the helpless, pray for me.

Well as you would have guessed, that day I started saying this prayer. I simply exchanged “pray for me” and added “pray for Aidan”. Well shortly thereafter Aidan started to make the progress that you see today. He has defied tremendous odds and his doctors are in awe as to how well he is doing. Well today is your lucky day because I am your stranger and I am giving you this prayer. You will not be saying it alone, because I have already exchanged “pray for Aidan” with “pray for Aidan, Caitlyn, and all other BSG children”.

You and Caitlyn are in our prayers,

Chet “Papa” Hammack

07/08/2007

2007-07-08T21:11:00.000-07:00

Sorry, I took the last week off from updating, so this may be long.

I'm still soul searching not so much how to get through this but what does this all mean. We saw a GREAT movie today called Evan Almighty. I had a few ooh moments during it -- like When God explained that God talks to us all and answers our prayers we just have to listen. If you pray for your family to be closer he does not necessarily send you all a warm fuzzy feeling inside about one another; but he gives you wood and tools to build an ark. ( you have to see the movie).

My question lately has been why did God give us Caitlyn if she only going to be here a short time. Also why were we given the knowledge that she may not be with us forever. Why do we have this grace period with an uncertain amount of time; but if you look at statistics death with in a few years. Why was she not taken instantly? Not that I would want that EVER. But what am I supposed to do with this grace period? What am I supposed to see? What have I been missing? What am I or Caitlyn supposed to finish? What are we to learn? There are so many questions and I keep my eyes open every day and try not to waste any moment of time.

Caitlyn is doing good. Her radiation will end this week - July 12th. The hair she lost is above her ears so her top hair covers it. Dr. Goldman is slowly taking her off the steroids. The steroid medicine has given Caitlyn a big appetite; so hopefully once she is off the medicine I will spend less time in the kitchen (YAY!)

Her MRI is July 23st. We don't expect to see much from it as her brain will be kind of jumbled from the radiation. They will just be able to tell if it is stable. We already think the tumor has shrunk because last week she had a cat scan. Caitlyn was soooooooo tired; and we were concerned -- so they did a cat scan just to make sure there was no water on the brain. It came back fine and Goldman told us it looks like the tumor has shrunk but he can not do any measurements with out an MRI. The reason she was soooo tired was too much FUN. We had a great 4th of July week.

I ran in the rally for young life 5K run. The route for this race runs right past our house. So halfway through the race, I got to my house and saw Jason and the kids sitting out front waiting for me to go by. This year Caitlyn, Jackson, and Patrick joined me as I went by. Caitlyn ran about a quarter of a mile with me. It was great. When she got tired we walked until we saw daddy with the car. I caught up with the boys and we all met daddy and Caitlyn at the finish line.

I have asked God numerous times for patience with my children and this is how he gave it to me. He had my three kids jump and join me during a 5k run just as I entered my zone. At first I thought, "Oh my time is going to stink!" Then I realized it's not the time we finish that counts but who was with along the way.

Thank you for visiting our site. Please don't forget about the other children who are linked to our site. So many are very close to getting their wings and need your prayers more then we do right now. Also please pray for Caitlyns uncle Mike who also battling a brain tumor as well. He started treatment the same time she did. This is such a coincidence because tumors are supposedly not genetic.

Kara

06/26/2007

2007-06-26T19:14:00.000-07:00

Hi Everyone
Thank you for your thoughts and support. I have had several wow moments since people have been sharing Caitlyns story with friends and family. It is like that saying "6 degrees of separation or Kevin Bacon" (or something like that). Some how we really are all connected to each other.

People keep telling me that they think I'm strong; but when I hear that all I can think of is "that is the furthest thing that I feel". If it wasn't for Caitlyn and the boys I would be feeling a lot more sorry for myself. As you know with kids it doesn't matter how you feel you MUST go on, you MUST get out of bed, you MUST put a smile on you face. You must walk in the memorial day parade with the boy scouts pulling your daughter in a wagon -- Just 5 days after finding out your only daughter has anywhere from 6 months to 5 years to live. Make the most of everyday isn't that the expression? As parents we don't get a sick day; nor do they allow us to have a pity party for ourself.

Only children truly know how to make the best of everyday because they don't have to worry about tomorrow. I am following in their footsteps everyday. So when I get emails that say I seem so strong I have to give my three beautiful children a high five in my mind; for making me make the most of everyday we have together.

With that said let me tell you about our past week. Caitlyn is almost symptom free for now. Dr. Goldman told us "this is a good day" with a big smile on his face. There have been a few days that she was tired; but for the most part treatment has not slowed her down. Her face is puffy because of the effects of the steroids; and she has lost some hair.

Today Caitlyn was photographed with her radiologists Dr.Marymont at Northwestern Memorial Hospital. This was for NWMH medical journal that will feature an article about pediatrics and radiology at the hospital. She did a great job and only had to be bribed slightly to ham it up for the cameras with the doctor. For this she was allowed to wear a little mascara for her pictures. That was like winning the lottery for her. She loves makeup.

Our days are mostly filled with traveling down town and back. We are really looking forward to the end of our six week treatment plan of radiation; so we can start our summer fun. We have fit in a few play-dates, swimming at a friends pool, lunches downtown, and water gun fights with neighborhood kids. We are looking forward to Palatines 4th of July festival coming up this weekend. The boys will enjoy their 7th birthday at the CUBS game this Friday with their dad and uncle. For now I will follow the lead of my children's innocence to live each day to the fullest. I have been searching through books and and the internet trying to find out how to walk through this and realized it was sitting in front of me the whole time, and not very quietly I might add. I tell ya we can be so blind and deaf sometimes when looking for answers.

I hope everyone enjoys the 4th of July festivities in your home towns. This is one of our favorite times of the year. We will be enjoying the parades ( the kids love it for the candy), the carnival (cotton candy is the first stop), fireworks ( which we have to have oodles of glow sticks that make us just as dazzling as the firework show), and BBQ's with our family.

We truly appreciate everything you are all doing for us. All the cards, gifts and food are keeping our spirits high and making us feel loved and most importantly not alone.

Kara & family

06/19/2007

2007-06-26T19:05:00.000-07:00

This last week has been the best week that we have all shared together in such a long time. There were changes in Caitlyn long before she was diagnosed with her brain tumor. The doctors have told me that Caitlyn's tumor has not been there very long; but I think what ever chemical imbalance that lead to the growth of cancer started with in the past year.

It was never anything medical; but something just seemed off with her. Nothing I could put my finger more of a gut feeling.I remember just before her symptoms started to show, thinking the tone of her voice didn't sound familiar and it hadn't for some time. Something about her spirit did not seem happy or at peace.I'm not one who goes around getting in tune with people's spirit and soul. I don't even go to church as much as I should. ( I do now ). I believe, however, a mother has a special gift to see inside their child. That doesn't mean we recognize it every time we see something wrong; and it may take us time to react on it; but we feel things.

I have felt so much in these past four weeks that I can only believe that this is all part of Gods plan. On May 23 my life changed forever, I changed forever. I will never look at the world again the same way. When Caitlyn was diagnosed with an inoperable cancer that gave her very little chance for survival I immediately mourned for my losses. All of the things that should have been for her. I mourned for all of the things I wanted to do with her. I cried for losses of my hopes and dreams for her. I couldn't close my eyes at night. because images of her would rush in of all the things that we had done, and all things that were still to come. The first week I cried and begged God to save Caitlyn. I asked over and over and over again to make her his miracle.

I still ask God to make her his miracle but I also know how many children are out there with cancer and other terminal diseases that need a miracle also. I see these children at the hospital and I see the looks on the parents faces and realized they are all asking for the same thing. I now pray less selfishly, just as hard for those children as I do my own. I wonder if Gods plan was to open my eyes to other people's pains. Sure I know terrible things happen and you feel sympathy for people but unless you walk through the pain you can't truly sympathize with them. You can only feel sympathy.

That's why we are adding other links to our site. Of other children who are suffering as well. I know we are not the only parents that are suffering and Caitlyn is not the only child with a terminal disease. I think in sharing information will help us realize there are so many others are in need.

Caitlyn's symptoms have cleared up dramatically; and the best gift is that her soul and spirit has returned. I truly feel like she has returned from a long vacation and we are getting to know each other again. This past week has been like getting reacquainted with an old friend. I know no matter how all this ends just having her spirit back is gift from God. I would have not said that four weeks ago. I would have wanted the whole package along with a promise of forever. I'm not saying I'm not asking for that; but I do recognize what God has given me this week, and for that I am truly grateful. Caitln is a gift and we are blessed to have her back.

Thank you to everyone for all the positive thoughts and prayers you have been sending.. I know you all have prayers of your own that need answering, and I want you to know that you are all in my prayers as well.

Kara Churak & family

06/11/2007

2007-06-26T19:01:00.000-07:00

This past week was starting out slow there was not a whole lot of change in Caitlyns symptoms. Despite this we tried to make the best of the last days of school for the year at St.Theresa. After treatment on Thursday we caught up with her brothers Patrick and Jackson at Field days. Caitlyn had a great time participating in Tug of War and relay races with the first grade classes.

Caitlyn has also been enjoying our rides downtown. While I drive, Caitlyn and Grandma Sharon sit in the back and color pictures for the art book they are making. We enjoyed the weekend with Grandpa Greg and Grandma Kathy who visited from Idaho .

We have received so many cards, letters, gifts, and visits from family, friends, and neighbors. We appreciate the prayers and positive thoughts. Our hearts are overwhelmed with gratitude to everyone who is helping us make this miracle happen.

I do believe it is working because today, just 13 days into her treatment she is running again, and can walk with out my help. When I look into her eyes I feel like I can see her returning to me. I know this is just the beginning and we still have a long way to go.

The one thing that concerns me is that she is having a reaction to the drug which is causing her to break out in a rash. We are hoping the cream the doctor prescribed will help cure that; but in addition we are asking for prayers. Please pray that Caitlyn’s body adjusts to the medicine.

Both doctors at Northwestern Memorial (Maryanne H. Marymont Radiation Oncology) and Children’s Memorial (Stewart Goldman) have been pleased with her progress. I truly believe it's a combination of the treatment and the constant reminder that she has been receiving everyday from all of you. It is wonderful to know how much she is loved and prayed for. Please continue to keep Caitlyn in your thoughts because this will keep her strong in the days ahead.

We also want to thank St.Theresa's first grade classes for the wonderful basket of build-a-bear stuff for Caitlyn and for being so thoughtful and including Patrick and Jackson. This has been a hard time for them as well.

Thank you,
Kara Churak & Family

06/01/2007

2007-06-26T19:00:00.000-07:00

These past 2 weeks have been life changing and have us moving in a hundred different directions at a fast pace to try and preserve the moment.We have thrown a birthday party for Caitlyn with all her classmates, family, dear friends, and neighbors. We also had family portraits taken. We went with extended family to the botanical gardens to take some memorable pictures together.

Our family is overcome by the love and support that our family, friends, church and school St. Theresa has shown our family in our time of need for love, support and trusting in the faith of God. I can not thank everyone enough and tell you how much it means. It is truly helping us keep our faith strong and hope for a miracle high.

When we received the news of Caitlyn's cancer on May 23 we were given a 2% chance to make it through the next year. We went straight to God and asked for better chances and two days later were told of a clinical trial that could give her a 25%. Again I went to God and said this is better but I need better than that. That night I found a boy in Seattle who has the same cancer and is in the same clinical trial and his tumor has shrunk 80%. I then thanked God and said I can pray on that. Caitlyn started her treatment May 30th.

She is 5 treatments into her 6 week treatment plan and in 8 weeks she will have another MRI that will tell us if she is responding to the treatment. We ask that you pray for us at this critical time of her treatment.

The Churak Family