COOKIE - Four days until COOKIE is 11!!!!

Dearest Friends and Family,
We're almost down to counting the hours. Every morning when COOKIE wakes up she tells us how many days until she's 11. Can you remember when you were 11? I remember Barbie Dolls and Hula Hoops. I got my first typewriter for my 11th birthday. My dad brought it home from work and it went right on my desk in my room. I pecked away for hours, writing poems and stories. Kind of like I do now. hahaha I guess that it's true some things never change.

Today was a really fun but hectic day. We went to Lewis Elementary in Downey. Lewis Elementary supports lower income families and they are one of the TOP FUNDRAISING schools for the Leukemia & Lymphoma Society! Isn't that something? Lisa and Ruth, the Principal and Vice Principal are wonderful women who maintain what seems like a quiet but firm demeanor. The students are so respectful and the ladies are very hands on and approachable. The entire student body seems very happy. We commented on how every grade level is polite and sweet and they opened their arms to COOKIE very readily! Now because they're one of the top fundraising schools, Radio Disney was there to entertain and have fun with all of the kids. We "ROCKED THE HOUSE" with all of the students! They were so excited to see COOKIE again this year. Last year they proclaimed the day she visited their school "COOKIE DAY" and gave her an official certificate. Today, on their marquis, they had "Welcome Radio Disney and COOKIE!" She was thrilled when she saw that! Lisa and Ruth presented COOKIE with a gift from the school. It was a very cute musical card that played "You're an All-Star!" and included in the card was a $100 gift card for Toys R' Us! COOKIE was so choked up when she opened it! All of the kids treated her like she was a celebrity and the DJ from Radio Disney kept reminding them why she was there and we had several chances to thank ALL of the students for their participation in the Pennies for Patients campaign. Radio Disney had little gifts for the winners of the Freeze Dance Contest and Limbo Contest and for correctly answering questions about Disney movies and TV shows. It was as hot as the surface of the sun on the blacktop but we danced and played along from 10:30am until 1:00, when we had to jet out to get to Parker's school in Torrance to pick him up. It was a great time and it wasn't until we stopped that we realized how hot and tired we all were. THANK YOU LEWIS ELEMENTARY!!!!!!

Also, thank you CLARE CAMERON for embracing COOKIE and her family all these years. We love working with you for the Los Angeles Chapter of the Leukemia & Lymphma Society!

COOKIE's progress is still slow with regards to her meds. She seems to be having trouble regulating her Tacrolimus level. This is the main med that she's taking. It keeps her body from having the graph vs. host disease that we've spoken so much about. It's a difficult level to maintain and the reason she still visits UCLA every week to have her blood drawn for the Tacrolimus level. Once it FINALLY gets regulated, they can begin to reduce her Prednisone once again. We're still hoping and praying that this can be done sooner than later. They really want her off of the steroid. She's been on them so very long and they cause all sorts of other problems long term. Once the steroid is gone, they can begin to reduce the intake of the Tacrolimus. Sounds simple? VERY difficult and very frustrating for COOKIE. In the meantime, staying at the level of meds she's on keeps her on an even keel. She's feeling well, except for occasional headaches, which by the way, can be very severe. She's been very concerned about how she's going to be feeling for this weekend. It's her birthday weekend. Dr. Sam assured her that he would keep everything as is so she can have a great bday!

Since COOKIE can't go to amusement parks yet, she got permission to celebrate her 2nd choice of venues. We're going to Irvine. We stay at the Doubletree Hotel, less than a mile from the Irvine Spectrum. We get adjoining rooms and have a blast! The hotel has a shuttle that takes you on a 3 minute drive to the Spectrum. Why there? This outdor "mall" has everything! Every restaurant you can imagine, stores that entice everyone, a pet store that has about 30 puppies at all times, a ferris wheel, a train, waterfalls throughout, a carousel, Dave & Buster's, Barnes & Noble, a movie theater and a bowling alley. What else could you want? And THEN, it shuttles you back to the front door of your hotel! The kids love it! All of this and room service too! Aunt Shannon is driving in because, as you probably already know, we travel in a "pack".

Parker had a cat scan of his sinuses and the results are in. He has severe sinusitis, not asthma. All of the treatment they had him on DID help him but now he's been referred to an ear, nose and throat specialist. The allergist changed all of his meds and added several more. He'll be on his own regime of medications. Oh brother. The fun never ends. The GOOD NEWS? He's as much of a trooper as his sister. I think he's watched COOKIE take a TON of medication all of his life so when it became his turn, he stepped right up. He's just more vocal about it. Ha!

Well, Folks, that's just about it. COOKIE has been asked to speak at Madronna Middle School next week. This is the middle school that she's set her sights on. She intends to enroll in the Fall. She knows several of the students that already go there and is really looking forward to meeting the principal and actually walking on the campus.

Wishing all of you much love and more! Stay happy and healthy until next time!
Love,
Cookie, The Grandma