COOKIE & Johnny......DEPP, that is! 08-25-06

Dearest Friends and Family,
The picture on today's newspaper front page is of the Black Pearl from "Pirates of the Caribbean" and it states "There's PIRATES in the South Bay!" They're filming "Pirates III" off of Palos Verdes and by word of mouth we found this out! It hasn't been advertised as far as we know. We did read in the same paper, about a month ago, that the Black Pearl was going to be berthed in San Pedro, while undergoing renovations for the movie, so we made the trek over there to see her from a distance several times. As luck would have it, while Matt was at his classroom working on some preparations for the beginning of the new school year, another teacher told him about the filming going on and that Johnny Depp was signing autographs at about 7:30, when they brought the Black Pearl into King Harbor in Redondo Beach.

Of course, he could hardly wait to come home and give COOKIE the news. We were so disappointed that we missed out. It just so happened that certain plans that Mommy and I had to go to Bingo last night were changed so we decided to take a little drive with the family by Redondo Beach, just to see what we could see. Well, we saw the white tents and the trucks and the crowd and we found a parking space and dove in. We were at the breakwall and watched in the early dusk as the Black Pearl, seen in the far distance, got closer to the shore. The crowd was abuzz with anticipation just knowing (hoping) that Johnny was in the near vicinity! The Black Pearl got closer and closer and finally got into the security of the breakwater and pulled over to a little island where a little boat whisked some of the passengers off to land (where the crowd was).

Well, we said, "What the heck?" We all walked over towards the crowd and heard screaming and saw cameras flashing but we couldn't see Johnny! We were told that there was a line around the other side. We walked around and the security guard said that they weren't letting any more people in the line. We could see Johnny from where we were, signing autographs and smiling. The crowd was very well behaved but excited, as were we! A police officer came over and took COOKIE's wheelchair and said, "Come with me." Shelee, Matt, Uncle Christopher, Parker and COOKIE all went with him and he took them up to meet Johnny Depp. He actually introduced her by saying, "Johnny, I would like you to meet COOKIE!" He was gracious and sweet and calm and put his arm around her and shook her hand and signed her hat ("COOKIE, A PLEASURE! Johnny Depp") Holy Cow! A dream come true for our girl! The same hat that Dakota Fanning signed! Her very most favorite hat! He touched her and she was in a daze! I watched from afar and I was crying so hard I could hardly breathe. Who could have asked for a more perfect outcome?! Parker was shy but just as thrilled. We're all HUGE "Pirates" fans and it was just so overwhelming!!

Oh, how's COOKIE feeling you ask? Well, I was getting to that. COOKIE is doing very well. Her meds continue to be tapered. We had a bit of a scare with her bilirubin a couple of weeks ago but it turned itself around and she's thriving, once again. Her platelets are as normal as yours and mine! Probably for the first time in 8 1/2 years!!!!!

A minor problem with her “lines”. COOKIE has two lines that come out of her body that are used for all IV’s and for drawing blood so she’s never poked for a vein. It’s called a “broviac”. One of the lines is blocked and blood cannot be drawn from it so the family is at UCLA, as we speak. They will use a magical little medication called “TPA” that will be put into the line and allowed to sit in there for about 1-2 hours. It should then clear the line and blood can be drawn. That’s the plan.

Parker and I are hanging out together and will probably take a little drive around the Peninsula to spot the Black Pearl yet again.

COOKIE is really doing well. Her face and little tummy’s swelling have gone down substantially since the reduction of the steroids and her appetite has decreased as well. She’s still on a low bacteria diet but has been allowed to have a few things added. Her strength has increased enough for her to get out of the chair and dance around the living room with her brother! She even rode her bicycle last week, once around the block. She was a little sore but will not be deterred from doing it again. She also put on her Heely’s and found that she still “has it!”

Slowly but surely, her health (which will be better than ever!) and her strength are returning. She’s still in a very critical period , throughout the reduction of her meds as it puts all of the responsibility onto her body and that will be the true test. Hence the juggling act with the meds. They mask and balance but COOKIE’s body takes over and that’s the goal….for COOKIE’s body to be on it’s own and maintain all levels. It will be about 6 more months before we actually get to that point.

We hope that you and your families are enjoying the last remnants of Summer, as we are. We’re in for some drastic lifestyle changes, with Parker beginning Kindergarten and COOKIE will begin with a home tutor from the school district.

We’re wishing you all the very best and thanking you for your continued support and friendships!!

Cookie and COOKIE and the rest of the Family!

COOKIE- DAY ONE HUNDRED!!!

Happy Anniversary to YOU! Happy Anniversary to YOU! Happy Anniversary to Dear Wonderful Beautiful Strong COOOKKKKIIIIIEEEEEEEEEEE! Happy Anniversay to YOUUUUU!

Today is Day 100! It's a magical number that signifies that you're body has engraphed and you're lookin' good! You're able to add a few more "goodies" to your low bacteria diet and your meds are being slowing decreased. WAIT! What will happen then?

Well, the combination of all of the magic meds that COOKIE takes are keeping her body in check so as NOT to let the dreaded graph vs. host diseaase peek in.

So far, so good.

As time passes and COOKIE's beautiful body takes over the production of it's own platelets, hemoglobin, hematocrit, white and red blood cells (as it already HAS!!), the amount of meds is s-l-o-w-l-y decreased to put more responsibility on the body.

So far, so good.

COOKIE's intake of the steriod Prednisone is waaayyy down now (no more taken at night!)and a reduced amount in the morning. Her intake of one of the most important drugs, Cyclosporin, is reduced also. Cyclosporin is the ANTI g vs. h disease drug and COOKIE's blood levels of this drug are done weekly in order to keep her in good balance.

So far, so good.

Her little body is stretched to the max. We're treating stretch marks all over her legs and tummy but we're also seeing her appetite decrease somewhat and eventually everything will be back to normal size. She's SUCH a trooper STILL NEVER ANY COMPLAINTS! She's walking around much more and actually starting up some of her household chores in order to make $$$ for shopping!!! oooooo yeah!

We dropped by Dr. Finklestein's office to say hello last Tuesday. We haven't seen him since the beginning of the year when we began going to UCLA. He's looking as dapper as ever and I think he was so thrilled to see his "special COOKIE" and Parker! It's always such a pleasure to share time with him and Cindy! We'll be going back under their care in about 6 weeks! We'll be released from UCLA's care and that will be yet another emotional goodbye! WHAT A STAFF of DOCTOR's we've been so honored to be associated with! How do you POSSIBLY say THANK YOU??????? We're stumped and so very, very grateful.

I hope this finds all of you and your families happy and healthy! Can you believe the summer is 1/2 over????

Much love to each and every one of you,
Cookie, The Grandma