COOKIE-Staying Cool and Cute! 7-28-06

Dearest Friends and Family,
How COOL are U? It's the hottest summer EVER! Our electric bill has TRIPLED since we use the air conditioners all the time now, but it's worth it! We spend a LOT O' TIME in the house and it's so important to keep my sweet little "peach" cool! She's doing really well considering we don't get out much. She's still in a very critical period and we're taking no more chances than necessary with her after care. As you can see by the picture, we did get out to a place called "White's Point" in San Pedro. It's one of our favorite places to go and she just so happened to pose with none other than Parker, the wonder brother! We also took a drive by Berth 46 where they have the "Black Pearl" from the Pirates movies moored. It's undergoing some rennovations for the 3rd Pirates movie and it will be there for a month! We drive by as often as we can just to get a glimpse of Jack Sparrow's beloved Black Pearl. What else would we be doing? We're waiting for my niece and her husband to get home from vacation so they can take us on their boat for a close up view! They don't know it yet so "mum's the word". :)

Well, as of Tuesday's doctor visit, COOKIE is producing her platelets and increasing all of her other levels as well. They were able to determine that a reaction she's having on her legs is NOT the dreaded graph vs. host disease so they decreased some of her meds again. This is crucial so that, eventually (by year's end) she will be off of the meds and her body will have completely kicked in to do it's DUTY! In the meantime, she's still doing the best she can, every single day.

We're headed to Palm Desert again this weekend for some REAL air conditioning! COOKIE and Aunt Shannon will stay indoors and do "their thing" and the rest of us will be in the pool! Cannot wait! On Sunday, we're all going to "Aunt Shannon's" movies and seeing "Monster House". It's like having a movie theatre all to yourself! They just don't have the crowds like we do here! It's HEAVEN!

I hope that you're all staying as cool and comfortable as possible! We love your support and your communication!
Wishing you the best of everything,
Cookie, The Grandma

COOKIE's Body Takes Over! 7-21-06

Dearest Friends and Family,
Well, as you can see from the title, COOKIE's body is taking over! Literally, it's taking control of it's platelets, hemoglobin, hematocrit, EVERYTHING NECESSARY to PROVE a successful bond marrow transplant!!! Let me show you how really GOOD This news is.....Normal range for "normal" folks for platelets is 150,000-450,000. They transfuse at 20,000. COOKIE was at 27,000 last Friday, and that's after receiving platelets every week since she's been home. On Monday, 7/17, platelets were 36,000. Yesterday, Thursday, 7/20, they were at 40,000 ON THEIR OWN!!!!!!! BIG TIME NEWS!!!!!! AND, if that isn't enough, she doesn't need red blood cells either!! We're absolutely THRILLED as I know you all will be when you read this!

They adjust her meds regularly and take blood tests of her "anti" levels regularly to guard against her suffering with too much graph vs. host disease. She does have a little more showing up because they've actually decreased the dosage on this one particular drug but they monitor it all the time. It's crucial that she doesn't take too much as it can cause seizures and too little opens the door for the graph vs. host disease so it's a critical teeter totter.

Our girl is getting stronger every single day. She's actually able to walk around the block now, slowly, but it's wonderful for her! She is absolutely the most perfect speciman on this planet. She constantly puts one foot in front of the other and does whatever it takes to go forward. She withstands the side effects of all of the medication she's taking with the knowledge that this is a temporary condition and she WILL prevail! I marvel at her quiet strength and unwaivering faith and confidence in herself.

The rest of us are plugging along, trying to stay cool and keep ourselves occupied. We went to Aunt Shannon's in Palm Desert last weekend. It was only 119 in the shade! Of course, COOKIE stayed in the house with Aunt Shannon and cleaned out closets and drawers. They had a blast listening to music and talking. The rest of us went outside to the pool and bobbed around avoiding Parker and his squirting pool toys! LOTS o' sunscreen later, we went inside to watch movies on their big screen tv and play some pool! It was really good to have a change of atmosphere! On Sunday, we went to see "Pirates of the Carribean"!!!!!! COOKIE got her one wish from the hospital. She wanted us to ALL see it together! We took up one whole row, which didn't matter because their beautiful theatres out there aren't crowded at all so we could sit anywhere. COOKIE has to wear a mask, which proves a little bothersome for the popcorn, but she LOVED the movie and BEING in a theatre after all this time!

We're trying to get all of our "ducks" in a row in preparation for Parker to start Kindergarten this year. It's going to be a HUGE culture shock for this little boy that's been so protected and never out of our sight. What am I saying? It's going to be a shock for all of us! He's facing a 5 hour day away! Holy Cow. We still don't know what school he's going to be in either! We're still working on that too! He has to go see his Pediatrician for some immunization updates too. Oh Parker, Parker. New things are comin your way, young man! Be strong!!! (I say this for our sake as well. Can you spell o-v-e-r-p-r-o-t-e-c-t-i-v-e? So can I but it doesn't help.)

Shoot! I raised 4 kids and just did what had to be done! Of course, I was the mom and dad and breadwinner too so who had time for particulars? This family is "special" in SO many ways and everything is a worry. Wish us luck. I think Park is going to be just fine but Mommy, COOKIE and I are going to be basket cases! ha ha ha!

COOKIE is going to be homeschooled through the school district. They'll send a tutor out to the house for her 5th grade year. She won't be able to attend school until the following year. She's really looking forward to that because she'll be going to the same middle school as many of her friends!

Well, as always, we're sending you our gratitude for being there throughout this entire experience. We're far from done but the news is all good at this juncture and we're so grateful for every day that we spend together. Wishing you all sunshine and smooth sailing! I'll write again soon! There's always something to write about!
With love,
Cookie, The Grandma and the Entire Family

COOKIE - A Star is Born

Dearest Friends and Family,
Well, we've settled in and we're still enjoying each other's company....THANK GOODNESS! Sister and brother have completely reacquainted and it's business as usual. We've been so busy getting used to our new routine that I don't even check email on a daily basis!

Here's another lesson in Bone Marrow Transplant 101........Before the transplant, they tested COOKIE's DNA. Of course, they also tested the cord blood's DNA. About two weeks ago, they did another DNA test on COOKIE to see how much of her blood is composed of her "old" DNA or the NEW cord blood. We've been very anxious for the results. She's 95% CORD BLOOD!!!!!!!!! THAT'S PERFECT!!! IT KICKED BUTT ON HER "old", leukemia cells and she is FULL of NEW DNA!!!!! We're very excited! The day of the transplant, she was SO wise in her statement that it was the "last day of her life with cancer".

COOKIE gets new platelets and red blood cells about every week to 10 days but it's getting longer in between. Her little body is working very hard to do all of the right things it needs to do. Every other Tuesday she gets a special tranfusion for the graph vs. host disease. The doctor's expanded her diet a little. She can now have oranges, as long as we scrub them thoroughly and peel them before we cut them. She felt like she had a FEAST, eating an orange yesterday afternoon! COOKIE is still banned from restaurants or shopping. She can go to the store at odd hours when less people are there but not the grocery store. Too many germs and bacteria. ALL she really wants to do is see Pirates! We're waiting another week and then we'll go in the evening. She'll have to wear a mask but she doesn't care. Whatever it takes to go see the movie!!!!

COOKIE goes to UCLA twice a week and Home Health Care comes to the house twice a week. Shelee has spent the last 3 weeks trying to get all of COOKIE's medications straightened out. There was a mistake made on two of her meds and it's taken 3 weeks to get it rectified! It can be a little frustrating. Of course, it's nothing in comparison to what they've already had to do so it's onward.......as usual.

Last night, on Wheel of Fortune, they played a rerun of a show that was aired two weeks before COOKIE's transplant. The star named Jack Wagner, from "The Bold and the Beautiful" soap played for the Leukemia & Lymphoma Society. He and his partner won $143,000 for the Society. We had been invited by the Leukemia Society to attend a dinner where Jack presented the check to them. He's a very nice man and was very attracted to COOKIE. We met his brother, Dennis, who is fighting a good fight against Leukemia also. Anyway, our neighbor's friend called her yesterday from Florida and said she saw COOKIE on TV. They were playing the rerun of Wheel of Fortune where Jack won all of the money and showed Jack and COOKIE at the end! Aunt Shannon, in Palm Desert and Grammy in San Diego both watched the show an hour before it's aired here in Torrance and called us! They were SO excited! We watched it here at 7:30 last night and it was THRILLING to watch it on TV!!! So, I included the picture of Jack and COOKIE for all of you to see!

I hope this finds all of you safely tan and having a wonderful summer with your families! We're enjoying every minute we can! Until next time.......Hugs and much love to all,
Cookie, The Grandma

COOKIE-DAY 70

Dearest Friends and Family,
I know it's been a while but we've just been spending the last two weeks getting used to living together again! It's been better than good having the whole family home, happy and as healthy as possible!

COOKIE spent her 4th of July EXACTLY the way she wanted to....with her friends. Every year our block has a "block party" and this year the real party was on our end of the block! We put up canopies and set up tables and there were lots of neighbors, families and friends that joined us to have a wonderful little celebration. COOKIE got her favorite beach chair, her favorite sweater, her favorite blanket, a bottle of Dasani and her Wacky Packages card collection and she was good to go! Her friends took such good care of her and they had so may laughs! The ended the night sitting the middle of the street, all bundled up, watching the fireworks from nearby Wilson Park! It was great day, especially for COOKIE and Parker! They had a blast!

COOKIE is doing well, dealing with the side effects of her meds and her transplant. Home Health Care comes on Tuesdays and Thursdays to draw her blood. She has a standing appointment at UCLA every Tuesday and also on Friday. This Friday she will be getting platelets and red blood cells. It's the longest she's gone without, on her own, since the transplant. Every day counts. Her body is getting stronger and stronger.

As the title implies, we are at Day PLUS 70, 70 days post transplant. 30 more to go to the coveted 100. At 100, she is able to venture out a little more, and resume a little more freedom. All within reason and all in good time but the numbers are very important to COOKIE. She keeps track to make sure she's ON track! She is one smart COOKIE as most of you already know.

Not much more to say. We're just living our lives and it feels great! As always, we're extremely grateful for the love and friendship that you've all shown us throughout this ordeal!

Love to you all,
Cookie, The Grandma