COOKIE - ALMOST 12! 02/19/08

Dearest Friends and Family,
Wow, it's gloomy weather this week. Everywhere you turn someone is coughing or sneezing. We've had our share, of course, because Parker gets a cold like no one else. I think it's because he goes to school with a bunch of little germ factories! Anyway, I hope all of you are staying as healthy as possible!

Since I wrote last, COOKIE did go to camp and was very successful! She was only a little homesick at the beginning. She found her footing, held her head up high and plowed through the 4 days smiling and making memories. She committed herself to the week long summer Camp Ronald McDonald and agreed to meet up with her new friend. We were soooo excited to see her and hear all about it. Parker had his arm around for most of the first day home. Of course, that all changed once the newness wore off and they became the normal big sister/little brother duo. I don't know how Parker learned to be such an annoying little brother. I mean, it's not like he took lessons or read the book but he's got it mastered!!

We were very happy after COOKIE's doctor visit last week to find out that she had actually gained a pound. COOKIE eats better in the late afternoon and evening. Anyway, she's holding her own and that's very exciting. She may soon begin getting her immunizations again. They'll start with a flu shot and if all goes well with that, they'll give her a couple of immunizations and see if she has any reactions. She has to start all over with them because she has new DNA and they have to be very careful. They're checking her immune system and it's not as strong as we'd like it to be but with time, we hope it will continue to get better.

She's still struggling with the Graph vs. Host Disease on her hands and there's a rash that comes and goes on her face and body. Also, she has some issues with her scalp that require special treatments (overnight) and constant monitoring but you'd never know about the condition to look at her and her beautiful head of fluffy, curly brown hair! It's getting so long that it bounces all over the place and she could, if she wanted to, pull it into a little ball of a pony! COOKIE has such a classic beauty about her.

And speaking of carrying herself classically, I wish EVERYONE could attend her annual speech at Downey High School! The Pennies for Patients Campaign for the Leukemia & Lymphoma Society is under way and Downey High School is one of the largest contributors! They have a student body of just over 4,000 and they hold two assemblies, each with approximately 2,000 students. They're so organized and enthusiastic! It's a great school and I have to tell you, you could hear a pin drop when COOKIE is speaking, except when they're cheering and applauding!!! They were cheering and applauding her after every sentence in the first assembly. It was with the older kids and they remember her from previous years. COOKIE has been speaking to them every year for 4 years now and they've seen her in various stages of her life....blonde, bald, ill and now a vision in beautiful dark brown curls. This year's speech was the most moving and spectacular speech she's ever delivered!
I absolutely could not be more proud of her and her self control. She's beginning to read with feeling and passion and understanding that she's actually delivering a story about her life. I cherish the feeling of invigoration and pride when this girl is sharing herself. I truly believe that she will see a cure in her lifetime and know that she played a part in helping to fund the research necessary to have found that cure.

NEXT YEAR, I'm going to drag as many people as I can with us! I can't wait to see how much they collect this year!

COOKIE made a very grown up decision for herself this month. She decided not to return to school but rather to continue her homeschooling and tutoring. She's thriving in her environment and spent many long and difficult hours contemplating her return. She met with the school officials and her teachers and they continue to be extremely supportive in her decision. COOKIE's wonderful tutor, Ms. Dena, stays in contact with COOKIE's teachers and the doors remain open for communication and guidance on both sides. It's a perfect situation for our girl.

We've been blessed over and over with wonderful people that have come into our lives over the years. One of them is a humble and brilliant woman that has been our liasion with COOKIE's school and has taken it upon herself to come by the house and pick up COOKIE's work, deliver it to school and keep the process going. KT has been the one to keep the communication between the teachers and COOKIE open. She has been an absolute GEM in sharing her knowledge and expertise and is an irreplaceable force that we couldn't be more grateful for!!! Thank you, KT!!!!

Next month, COOKIE will be 12. When she was giving her first speech this year at Parker's school, she mentioned that she's been fighting this fight for almost 10 years. It actually startled her when the realization of that hit home. She kind of shook her head and gave a giggle and said "Wow." Yeah. Wow.

I hope everyone is happy and healthy. Until next time, wishing you love,
Cookie, The Grandma