Back from Disney

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

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

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

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

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

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

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

Thank you for all your prayers,
Kara

Disney or Bust

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

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

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

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

Kara

ABTA Walk - April 26, 2008

A Miracle for Caitlyn Team

to participate in the

ABTA - Path to Progess

5K Run/Walk

Saturday, April 26, 2008

Montrose Harbor, Chicago

Food & Festivities 8 am Start time 10 am

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

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

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

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

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


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

Thank you for your support !

03/26/2008

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

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

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

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

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

Thanks,
Margaret Donahue

Birthdays are a blessing

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

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

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

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


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HAPPY 6TH BIRTHDAY CAITLYN

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

Kara

We are not cheated we are gifted

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

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

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

Kara