07/27/2007

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

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

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

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

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