Hi Everyone
Thank you for your thoughts and support. I have had several wow moments since people have been sharing Caitlyns story with friends and family. It is like that saying "6 degrees of separation or Kevin Bacon" (or something like that). Some how we really are all connected to each other.
People keep telling me that they think I'm strong; but when I hear that all I can think of is "that is the furthest thing that I feel". If it wasn't for Caitlyn and the boys I would be feeling a lot more sorry for myself. As you know with kids it doesn't matter how you feel you MUST go on, you MUST get out of bed, you MUST put a smile on you face. You must walk in the memorial day parade with the boy scouts pulling your daughter in a wagon -- Just 5 days after finding out your only daughter has anywhere from 6 months to 5 years to live. Make the most of everyday isn't that the expression? As parents we don't get a sick day; nor do they allow us to have a pity party for ourself.
Only children truly know how to make the best of everyday because they don't have to worry about tomorrow. I am following in their footsteps everyday. So when I get emails that say I seem so strong I have to give my three beautiful children a high five in my mind; for making me make the most of everyday we have together.
With that said let me tell you about our past week. Caitlyn is almost symptom free for now. Dr. Goldman told us "this is a good day" with a big smile on his face. There have been a few days that she was tired; but for the most part treatment has not slowed her down. Her face is puffy because of the effects of the steroids; and she has lost some hair.
Today Caitlyn was photographed with her radiologists Dr.Marymont at Northwestern Memorial Hospital. This was for NWMH medical journal that will feature an article about pediatrics and radiology at the hospital. She did a great job and only had to be bribed slightly to ham it up for the cameras with the doctor. For this she was allowed to wear a little mascara for her pictures. That was like winning the lottery for her. She loves makeup.
Our days are mostly filled with traveling down town and back. We are really looking forward to the end of our six week treatment plan of radiation; so we can start our summer fun. We have fit in a few play-dates, swimming at a friends pool, lunches downtown, and water gun fights with neighborhood kids. We are looking forward to Palatines 4th of July festival coming up this weekend. The boys will enjoy their 7th birthday at the CUBS game this Friday with their dad and uncle. For now I will follow the lead of my children's innocence to live each day to the fullest. I have been searching through books and and the internet trying to find out how to walk through this and realized it was sitting in front of me the whole time, and not very quietly I might add. I tell ya we can be so blind and deaf sometimes when looking for answers.
I hope everyone enjoys the 4th of July festivities in your home towns. This is one of our favorite times of the year. We will be enjoying the parades ( the kids love it for the candy), the carnival (cotton candy is the first stop), fireworks ( which we have to have oodles of glow sticks that make us just as dazzling as the firework show), and BBQ's with our family.
We truly appreciate everything you are all doing for us. All the cards, gifts and food are keeping our spirits high and making us feel loved and most importantly not alone.
Kara & family
