11/20/2007

(11/18/07 - A Princess meets Daisy Duck)

Hi Everyone

Just a quick post. The Churaks are going out of town the day after Thanksgiving so things have been a little hectic between daily life, doctor visits, laundry, and packing.

Caitlyn is doing well. She had two very long days at the Hospital this week. Monday she had her second dose of Avastin; and today she had her first dose of Irinotecan -- both via IV drip.

Caitlyn also had a MRI yesterday. It was the first MRI where she was not sedated. Kara sat in the room with her and Caitlyn watched her for awhile -- but then she fell asleep and was able to lay still for the whole 90 minute MRI. Is this not an AMAZING girl!? She is a lot braver than I am that is for sure. She even impressed all the nurses on the floor.

Please continue to pray for the Churak family. Pray that Caitlyn accepts the new medicine without side effects. Please also pray for the other families battling DIPG and other illnesses especially Katie Metz (www.carepages.com "katiemetz") and Natalie Rose Jones (www.caringbridge.org/visit/natalierosejones)

Please also pray for all families traveling this holiday.

Have a Blessed & Happy Thanksgiving!

-Margaret Donahue

11/05/2007

Today Caitlyn had the first part of her dose for the new trial Avastin. She seems to be tolerating it well. No side effects yet and hopefully not any later as well. On November 19th she will get her dose of Avastin and Irinotecan. The combination of the two of these drugs are or we hope more effective then just the Avastin. Alone we know does not work on it's own. The Avastin is supposed to cut off the blood supply to the tumor and the Irinotecan is supposed to tell the body to not try and repair itself. Let's pray this works.

We continue to live for each day that is in front of us. It is not easy I have to constantly tell myself "be happy for today. Today she is feeling good and is healthy". It only makes the pain hurt more when you think about the future and try and plan for Christmas and Thanksgiving and think "will she still be healthy then?" So that is why we have already bought our Thanksgiving outfit and have already worn it twice. My suggestions to all moms that see this posting. If you already have your children's holiday outfits, let them wear them now and when ever they want to. It is a very freeing feeling to let go of all those restrictions we put on ourselves that go along with planning.

Please continue to pray for our family and all other family's that are going through an illness with a loved one.

Kara

There are two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

11/02/2007

We received Caitlyn's MRI results late yesterday. The test showed no enhancement of the tumor. This was a great relief after the last two MRI's were not what we had hoped. That being said, she is eligible for the trial with Avastin and Irinotecan. We will start this Monday. She will have an IV infusion every 15 days. Please pray that the side effects are manageable for her body and that this works for her.

As a lot of you may know we have been anxiously researching any and every treatment that Caitlyn may benefit from. We have been following leads that people are sending us. Here is where we are with that. Several people told us about Dr. Spetzler who operated on a local girl with an inoperable tumor. Her story was in the Daily Herald. We contacted the doctor and sent scans for him to review. He called us back to tell us he could operate on part of her tumor; but he could not remove the whole thing. Our doctor even talked with him. Unfortunately this is an all or nothing situation. Removing part of the tumor is of no use -- because the type of cancer is very aggressive and will only grow back.

We have also looking into a couple different clinics and institutes that claim to have a cure; but they show as much success rate as the clinical trials we are looking at. I do believe diet is a very big part in trying to cure cancer but it is easier said then done to get 20 different vitamins down a 5 year old. Or juicing 20 pounds of vegetables a day. We have to think about the quality of life and her happiness. She is so happy everyday and I don't want to take that away from her. We are working with a nutritionist to see if they can help us sort all of this out.

Thank you for all your support, prayers, and for trying to find a cure for our daughter. It means so much to know that people we know and don't know care so much.

Kara