COOKIE - ONE YEAR LATER! 04/27/07

Dearest Friends and Family,
We cannot believe Spring Break has come and gone! It's pretty neat how they do things these days, staggering the different school districts time off so the streets aren't overrun with little people EVERYWHERE! hahahaha!

Since I last wrote, regarding COOKIE's spinal tap, all of the news has been good. No....make that better than good. They took four vials of fluid from her spine and it was all clear. Our worst fears were NOT realized and when Dr. Sam called to talk to us, he was close to tears himself. I happened to be the one who answered the phone when he called and he told me he had been putting on a smile but inside he was really scared. We said, "We know. We were too." But all of that is past. COOKIE is actually doing better than she has in a long time. Now that we know her little body is doing all of the right things, we're able to look forward with a renewed sense of hope and peace. We really are beginning to see the light at the end of that tunnel, believe it or not. She's taking a VERY low dose of Prednisone, 2.5mg every day. Her appetite is next to nothing but about every 3 days, she'll actually eat a full meal, otherwise, she's nibbling here and there, and only if we remind her. We're trying to keep her hydrated though and keep all of her working parts, well, working.

Next, quite possibly on tomorrow's visit, they will reduce the Prednisone to 2.5mg every OTHER day. The trick is for her body to get used to being without it and to eventually realize that it needs to eat and function without the aid of the steroid. Next comes the anti graph vs. host medication, Tacrolimus. She's at a very low dose of that already so we're hoping, hoping, hoping that COOKIE's stamina and resolve and determination and BODY just kicks in and gets going without meds. It's a HUGE feat she has to accomplish but accomplish it she will, no matter how long it takes her! We've had more than one example of just how strong this little girl really is.

For Spring Break, we all went to Palm Desert and soaked up the warm weather and sunshine. It's such a different atmosphere than home and we always have a wonderful time at Aunt Shannon and Uncle Johnny's.

Friday……April 27, 2007
I got sidetracked last week when I started writing so I’m picking up where I left off….

The Child Life Specialist at UCLA invited Shelee, Matt, COOKIE and Parker to go to a Dodger game! Not just any Dodger game either. It was the Dodgers vs. Giants. They were to be special guests of Derek Lowe, the Dodgers pitcher! They were greeted by his girlfriend, and taken into the Dodger Dugout Clubhouse! They met and ate dinner with several of the players, including Derek. Out of his own pocket, he pays for 10 seats, at $350.00 a seat, and offers them to what he calls “LOWE’s HEROES”. The family was treated like royalty, surrounded by every delicious temptation you can imagine! They were told to eat and drink anything and as much as they wanted. Then their seats were right behind homeplate, 10 rows up! They got hats, autographs, books, and hugs and they had a blast! Neither of the kids have ever been to a game before and they loved it! As you can see by the picture, Parker go right in there and was yelling at all of his new best friends on the field! They were given a tour and taken out on the field too. It was truly a memorable night.

And, speaking of a memories…………….

ONE YEAR yesterday! We certainly remember where we were one year ago yesterday! We ALL remember being very scared and very brave. We remember how anti-climatic the actual transplant was. It took 6 minutes! After months and months of anticipation the procedure itself took 6 minutes. Pretty astonishing!

Here we are, ONE YEAR later! On last Tuesday’s UCLA visit, they gave COOKIE two thumbs up! They took her completely OFF of the Tacrolimus, one of the immuno- suppressants that she’s on!!!! She doesn’t have to take it any more! No more 10:00am and 10:00pm time table! Her appetite is a little better and she’s feeling very strong! She doesn’t have to see the doctor’s for TWO WEEKS! This will be the first time she’s been able to go two weeks!

We celebrated the One Year Anniversary having a wonderful day! After Shelee took Parker to school, we woke COOKIE up by singing “Happy Anniversary” to her! After she was dressed she went downstairs with Shelee and I finished getting dressed. I snuck into COOKIE’s bedroom searched high and low for her container that she keeps her American Girl doll clothes in! My job was to dress her two dolls and “smuggle” them downstairs and into the back of the car. BECAUSE……Our surprise was take her to the American Girl Place in West Los Angeles. It’s a two story store that’s just for girls and their American Girl Dolls! It’s an incredible feast for the girly sensations! They even have a Café with little chairs that attach to the tables for your dolls! Wait! There’s more! They have little hooks that you can rest your dolls on in bathroom STALLS! The entire store is dedicated to the girl and her dolls. It’s AWESOME! She was SO surprised and SO excited! I’d give anything to freeze the look on her face again!

In the meantime, Aunt Shannon and Uncle Johnny drove in and were at the house. Neither of the kids knew they were coming. We came home from West LA and just in time to pick Parker up from school. When we got home, we unlocked the door and the kids walked into the living room FILLED with pink balloons with long, curly pink ribbons hanging from the ceiling! COOKIE said “Someone’s been in our house!” Then they saw Aunt Shannon and Uncle Johnny in the kitchen and both kids burst into tears! It was a really cool way to end the afternoon!

We decided that Parker has paid a price for this past year as well and we wanted him to know what a special boy he is and how thankful we are for him. We all hugged him and told him how we felt. He was so choked up. I was surprised at how emotional he was at what we were telling him. We bought him a little toy that he has been asking for for months. It’s a smaller version of the “claw machine” that they have at arcades. We had filled it with little candies and toys. It’s actually a bank too. He was SO surprised!

We all went to Islands for dinner and toasted our two remarkable kids. When we came home, our neighbors came over and we all had cake and ice cream. It was a beautiful day of celebration and it was filled with emotion all day long.

I love this family so much.

I hope all of you find moments to celebrate, though not as critical as ours, and I hope you make the time to not let those fleeting moments go by. It’s virtually impossible to have something to celebrate very single day and we’re really not the “Mary Poppins” family that some of my stories portray (far from it!) but I’ll tell you one thing…..our lives all changed 9 years ago and we have discovered that there really is more to celebrate in life than just what meets the eye.


Wishing you all health and love,
Cookie, The Grandma