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
Monday, October 29, 2007
Monday, October 22, 2007
10/22/2007
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
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
Wednesday, October 17, 2007
10/16/2007 - MRI #3
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
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
Tuesday, October 16, 2007
10/16/2007 - Conquer Childhood Cancer Act
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.
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
Monday, October 15, 2007
10/15/2007
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
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
Saturday, October 13, 2007
10/18/2007 - Wine Tasting
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.
Friday, October 5, 2007
10/10/2007
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.
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.
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