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
