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

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

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

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

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

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

Kara and family

New Treatment - Nimotuzamab

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

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

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

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

Back from Disney

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

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

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

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

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

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

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

Thank you for all your prayers,
Kara

Disney or Bust

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

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

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

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

Kara

ABTA Walk - April 26, 2008

A Miracle for Caitlyn Team

to participate in the

ABTA - Path to Progess

5K Run/Walk

Saturday, April 26, 2008

Montrose Harbor, Chicago

Food & Festivities 8 am Start time 10 am

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

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

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

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

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


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

Thank you for your support !