COOKIE's World, As Seen By Cookie

Dearest Friends and Family,
It's Tuesday night and all is well. I hope you enjoy the photos of the little family. I thought it would be nice to see Shelee and Matt for a change too! Parker is giving the sign for "I Love You" so I thought this was a good picture to sum up the "essence" of this family.

It's been another eventful few days, as they all seem to be. You never know what to expect from one day, or phone call, to the next. COOKIE is doing better mentally so that's a plus. Auntie Shannon took Parker home with her on Sunday so I was able to spend entire days with COOKIE and family over the weekend.

We did something very new and different. We played games, we watched movies, we laughed, we cried. BUT, we really did do something different. One of our dear friends had given COOKIE a set with several cds from old radio shows. They're suspense broadcasts that are about 30 minutes long and I climbed into bed with COOKIE and we listened to Ray Bradbury's "The Screaming Woman" and "Zero Hour". It was really a treat and we were both completely engrossed in the shows. Shelee and Matt came back from an outing and they got into it too. We had a lot of fun doing this and there are several more to listen too. Fun stuff! Thank you, Ross Racing Family!

Aunt Shannon was on her way from Palm Desert directly to UCLA where her and Parker sat on the 10 Frwy. for 2 hours due to an oil spill. They finally were able to get off and turn around and go back home. She'll try again tomorrow! Parker got another DAY pass to visit his sister because he hasn't been around any kids for about a week so the doctor said COOKIE could have a nice long visit! They were both very excited and very disappointed but tomorrow is another day!

We're working very hard on this end to get ready for the FUNdraiser/Yard Sale this Saturday. Every time I leave the house there's a new pile o' stuff in the yard when I return! We've advertised this heck out of this thing! We're just hoping we have enough to sell because EVERYONE in Torrance and beyond has received a flier! Wish us luck! I spent the morning passing out fliers to businesses and parked cars and the afternoon cooking for the family and baking for the Bake Sale! "Let them eat cake!" We may have NEWS COVERAGE for this event! Smiles, Everyone!

With regards to COOKIE's counts, there seems to be a little bit of activity so stay tuned because when they go, they're going to soar. I just know it. Today marks 43 days in the hospital and counting, 34 since transplant.

Isn't it amazing how you can rearrange your "normal"?

I hope all of you are well and thriving! We love your support and thank each and every one of you for your individual friendships and ongoing faith!

More to follow POST FUNdraiser!!! Think good thoughts of good cells and good sales!
Ha!
xoxoxo
Cookie, The Grandma

COOKIE's Memorial Weekend SUNDAY

Dearest Friends and Family,
Most of you know that there are three things that COOKIE loves (not counting Parker)....
Hilary Duff, the color PINK, and turtles, not necessarily in that order. One of the doctor's came in this morning and told COOKIE that he was thinking about her and how much she loves turtles. He wanted to remind her that the "slowest turtle wins the race". Our girl is as slow as a turtle when it comes to producing white blood cells. They went up a point today. At least they're going in the right direction. It was little consolation for COOKIE though. She's been a little depressed and very, very homesick. She woke up and felt like crying immediately this morning. Never a good way to start the day. (Sunday)

Aunt Shannon took Parker home to Palm Desert for a 2 day visit to her house. This is the first time he's ever been away from home without Mommy or Daddy or Grandma. He was so excited and so was Uncle Johnny and Aunt Shannon and their friend, Gave. They went grocery shopping and went to Toys R' Us to buy new pool toys! He's going to have a wonderful time! Mommy spoke with Auntie Shannon tonight and he's had a great day and the weather hasn't been too brutal either. Today they races remote control boats in the pool. Tomorrow they swim. He told Auntie Shannon, "Thank you for letting me live with you for a couple of days."

I went to the hospital about noon and forced Shelee and Matt to leave and go do something for the afternoon. COOKIE and I talked and played Yahtzee (She won one and I won one. We quit at that.) We watched "Pirates of the Carribean". In between she had to do her mouthwash, take her pills, irrigate her sinuses, take some new liquid meds for the blood in her urine, put on her Emla Cream to get ready for her injection at 7:00pm. She ate some lunch and took a little nappy poo too. Every time I tried to turn off the movie, she would open her eyes so I just left it on. When she woke up we still had a good hour to finish the movie. BUT, she still had to take more medicine, get her shot, take her bath, get her dressing changed and irrigate her sinuses again and take a BOAT LOAD of medicine AGAIN!

Sometime in the afternoon we had a cry together and a serious chat about working really hard to stay positive, to stay thankful, to try to greet each day with a smile and to understand that this is TEMPORARY! She is so homesick and you can see it all over her beautiful face. COOKIE wants to just quit all of this business and go home. Well, guess what? That's not acceptable now, is it. But, WHO CAN BLAME HER?

Before I left, COOKIE had a slight headache. She took some Tylenol and said it was getting better. I went home about 9:00pm and I called to say goodnight about 10:20pm. COOKIE was vomiting. She had gotten herself (and her mommy) all worked up and she got sick trying to take her BOAT LOAD of pills. After she got sick, she felt better and got all of her medications down. Tomorrow is a new day and hopefully all the talking that both Shelee and I did today will help her (and us) to keep putting our best foot forward and get through this.

The pictures show COOKIE after sinus surgery and COOKIE two days later. She's a remarkable little girl with an old soul and a heavy burden on her shoulders. She's certainly entitled to a couple of "off" days but that's it! She's got to find her strength again and fight the good fight. I know my COOKIE. She'll be back tomorrow in full force.

I'll close this blog with two words.....cancer sucks.
With love,
Cookie, The Grandma

COOKIE, Day +31

Dearest Friends and Family,
Please pray for white blood cells. It's time for COOKIE's body to kick in and do it's job. It's time for some good news.
More after my visit today.
With love,
Cookie, The Grandma

COOKIE's unavoidable surgery today.....

Dear Friends & Family,
The picture is COOKIE in her brand new, genuine, fresh from Italy, PINK LEATHER jacket that her friend Carol brought back for her! She is tinkled PINK! She loved the jacket so much that she didn't want to take it off! Pretty stylin' laying in a hospital bed with a dozen lines of meds running and a beautiful pink leather, and not just any leather but ITALIAN leather, jacket on! That's MY girl!

I'm sorry to say that the headaches didn't go away. They told Shelee and Matt this morning (Thursday) that they had decided to go ahead and do surgery on COOKIE's sinuses. The reason for the surgery is to make sure there isn't any bone damage and there is no fungus. They intend to drain her sinues and take cultures. So, Aunt Shannon to the rescue. She took over Parker Patrol again today so I could get showered and go back up to the hospital to be with Shelee and Matt.

Very difficult morning. COOKIE was very frightened. (Actually ALL of us were.)Everything is SO critical at this stage because she has absolutely no immune system so every single bump in the road seems like a HUGE mountain. Thankfully, the staff is wonderful and the once we got down to surgery, the anesthesiologist turned out to be one of those wonderful doctors that's doing exactly what he should be doing for a career. He made everyone feel at ease and put a smile on all of our faces. COOKIE was EXTREMELY brave, as always. They allowed Shelee to suit up and go in with her until she was asleep. Matt and I waited outside. When Shelee came out she said COOK was doing well and was out like a light. We went back up to the room to wait and wait and wait and wait and wait. Our nurse called surgery every 10 minutes to make sure we knew exactly when COOKIE went in the recovery room. She was in surgery for 1 1/2 hours!

The doctor actually called our nurse's special cell phone and spoke directly to Shelee. He told her that all went extremely well and they didn't find any of the bad things that potentially could have been there. That's good news. The other good news is that there is no packing in her beautiful little nose. They actually went into her sinuses, got some cultures, and checked all around to make sure she is fungus free. VERY IMPORTANT!!!

Shelee and Matt went down to the recovery room and I waited in COOKIE's room. About 45 minutes later, they brought her up and we made her cozy in her bed. She had a gauze taped under her nose and everyone made jokes about her having a mustache. She actually looks like Mario from the Mario Brothers video games! :)

So much going on in that little room of COOKIE's. We have the Attending Physician and her Resident, we have the Infectious Disease Physician and his Resident, we have our nurse, we have the Child Life Specialist, and we have the Care Partner. Everyone has a function and everyone wants COOKIE's attention. It's a zoo, literally.

Once the crowd clears, we can get her settled and ready to face the evenings events. She has to drink at least a cup full of liquid in order to eat, which she hasn't done yet today and it's 4:30pm. She must take a CUP full of pills, do her mouthcare, change the gauze under her nose, get her GCSF injection, get her bath and change her dressing on her broviac. In between, she needs to eat her dinner. When she's in the bath we change her bed.

Finally, everything is done and I'm ready to leave. My darling girl has had a trying and tiring day and COOKIE has too! Yup, my Shelee is one of a kind. She is so on top of everything and the entire room is completely organized for every single possible need that may arise. Her emotions and heart have been through the ringer, once again and, once again, Matt is there to balance everything out with his middle of the road attitude and can do spirit. I fill in the gaps and get in the way but that's my job. Auntie Shannon is home trying to keep Parker happy and on an even keel. She's suffering with an inflamation of her gum and is taking antibiotics but nonetheless, she absolutely fills the remainder of the gaps.

KUDOS Family! A job well done and we can all go to sleep tonight and forge on to face the new challenges of tomorrow with a renewed spirit!

Thank you, one and all, for your support and love. Please understand that it's sometimes difficult to share everything and to keep the smile going on but don't let that scare you away from continuing to check on COOKIE. Thank you for doing everything you're doing to help this family raise their spirits AND raise donations! We're looking forward to the FUNdraiser/Yard Sale coming up on Saturday, June 3rd!

All my love,
Cookie, The Grandma

The DAY after......

Dearest Family and Friends,
For some reason that I haven't quite figured out, the very next day after an especially good report about our girl, invariably we experience the "valley" side of the peaks and valley's of post bone marrow transplant. Today, Monday, was such a day. COOKIE could barely wake up this morning she had such a bad headache. Today's nurse was slow and needed "teaching" every step of the way. Not a good omen when the day starts out like that. It got worse as the day went on. The doctor of the day came to the rescue and made things happen that needed to happen. Tests were run, results were obtained and by dinnertime we were told we could all breathe easy and rest assured that COOKIE is right on track. This is a very simplified version of what turned out to be one heckuva day. I thought it share-worthy since I had painted a much rosier picture the night before.

To make a long, difficult story short, it was a very draining, emotional and physically challenging day for many of us. Especially, of course, for COOKIE, Shelee and Matt. Thankfully, everything got resolved, including COOKIE's headache, which didn't actually go away and allow her to function until 6:30pm! Needless to say, none of us functioned at 100% either.

Aunt Shannon and I did our best to make this a good birthday DAY for Parker. We're so grateful that he got to have a little party at his preschool. I'm attaching a picture of his celebration the day before at the motorhome. It's worth sharing.

As I always say, tomorrow is another day. The last time we saw our beloved Dr. Finklestein, he said to Shelee and I, "This is going to be a ride. Hold on." We've used that phrase more than once. He was so right and we are so holding on.

So, hold on, Folks.
Love,
Cookie

Dearest Friends and Family,
Whew! What a week! It seems like the longest week in history! Parker had a cold so we had to keep him out of school all week. Yes, that's right. All week L O N G because we needed him to be completely well by this weekend. Aunt Shannon went home for a couple of days and Parker and I faced each day with renewed challenges. He was too sick to go to school but not sick enough to be on the couch all day. We read every book in sight (and we have a LOT of books), we played with every car and reenacted every scenario we could muster up. By Thursday, Parker was much better but Grandma was POOPED! Aunt Shannon came back Thursday night and we had to get ready for the BIRTHDAY WEEKEND EXTRAVAGANZA!

COOKIE's week went smoothly enough except for a hiccup or two. (That's a medical term for small bumps in the road.) Looking back on the week, she did really well. We're still waiting for her counts to move upward. Tomorrow, Monday, will be 25 days since the transplant. We knew the cord blood transplant would take longer to engraph and we're hoping to see her adorable little body producing some white blood cells any second now. Her adorable little body is a little bit "puffy" right now, as you can see from the pictures. Being chemo-FREE and on steroids, she's eating everything but the quilts on the bed. Her tastebuds have changed so much and she's trying all sorts of new foods and lots of it! She tried on a pair of her favorite Limited Too pants and she was laughing so hard when she told me about them. She said they fit like a wetsuit! hahahahahaha! I LOVE her sense of humor!
Mostly because I have some pants like that too! hahahahaha!

One other little hiccup was when one of the doctor's with absolutely no bedside manner whatsoever came in and delivered some news to COOKIE and Shelee that was upsetting and ruined their day, as it were. Without any kindness or empathy he simply stated that COOKIE needed to consider having GCSF injections to boost her white blood cell count because it was taking so long for her body to produce them. He said it in such a manner that implied that something was wrong and they needed an answer. Just the evening before, one of their favorite doctor's came by just to visit and told them that everyting was "on track" and there were no worries then this person comes in without even looking at COOKIE or addressing COOKIE and after he left, they were shattered. COOKIE was worried that the transplant didn't work and Shelee had to keep both herself and COOKIE together all day long until they could get some decent information. Thankfully, this person was only on for the weekend and is not the attending physician. He has a lot to learn but you have to wonder that if his people skills don't come naturally, can he actually acquire them? For others after us, I hope so. Shelee went to other sources and was reassured that all is well and there is no reason for alarm.

Think about this....how difficult is it to give up all of your control and put all of your faith and trust into the hands of others. To give up everything you know and have learned throughout your life and implicitly trust others to make the most important decisions EVER concerning the life of your child, and ultimately the lives of the entire family. Shelee and Matt endure a lifestyle of family in a little square room with 2 beds, a toaster oven, the constant roar of the hepa filter and constant interruptions while maintaining smiles and good manners and making sure everyone around them is comfortable. We wait at home, going through the motions of raising a 5 year old and never letting him feel the pressure we're under or the loss of the the other half of our family that we feel every single moment of every day. This is a tough deal.

We were at the City of Torrance Armed Forces Day Parade when I called Shelee on Saturday to tell her that we had a front row seat and we were videotaping for COOKIE. This was right after she had spoken to this doctor person and it took all I had not to jump in the car and rush to the hospital just to be with them. We talked and cried and sorted it all out before we hung up and it was back to the parade for me. I wanted to run out in the middle of the street and BEAT the HECK out of the drum that the kid in the marching band was beating on! I loved when the bomber flew overhead and it shook my very insides. Onward.....as per usual.

COOKIE is still struggling with elevated blood pressure, off and on, but for the most part it's under control. She says the only time it's really high is when she's playing Yahtzee! Can you imagine? Why would she be upset then? It's only a game and, by george, even my cute, adorable little COOKIE needs to lose once in a while! No competition here! :)

The picture of COOKIE and PARKER is from today, Sunday. Parker got a pass to visit his sissy for his 5th birthday as long as he was healthy and wore a mask. They were so darling! COOKIE was crying so hard when he came into the room and Parker could hardly talk he was so choked up. It was a defining moment to be sure. They haven't seen each other for over a month, except in videos. COOKIE was able to give him the gifts she had gotten for him. He was so excited because it was remote control "Mater" (the tow truck)from the new movie coming out in June called "CARS". They had a blast playing with it in the room.

I stayed with COOKIE while Mommy and Daddy took Parker back to the motorhome where Aunt Shannon, Uncle Johnny, our friend, Gave (Gabe), Grammy, Grandpa and our friend, Reggie were all waiting to have a birthday bbq for him. They had decorations, presents and a cake to help Parker celebrate his birthday bash in Parking Lot 36!
We all went in together and bought him the Lionel Polar Express Train Set that he's been wanting ever since he saw it at the train store! He was SO excited! Grammy and Grandpa bought him an awesome Market Place Stand and they customized it with "Parker's Market" written in wooden letters on the front. Something else he really wanted. Tomorrow (Monday) is his real bday and he'll be having a party at his preschool. It's been a good bday, huh Parker???? xoxoxo

Meanwhile, back at the room, COOKIE and I got caught up with the week's events. I had not had a chance to visit all week so we had a lot of visiting to do. She's feeling pretty good but is looking forward to the time when they reduce the amount of steroids she's taking because they really do cause her to eat much more than she's comfortable eating. The rash on her neck and hands is much better. We played her newest video game called Brain Age and it's very challenging! I can really see where she's grown in her math and reading skills. It's a fabulous teaching tool! Grammy and Grandpa came up to the room for a short visit and we ended up playing, you guessed it! Two games of Yahtzee! I'm not sure who's wearing the crown at this point!

COOKIE does have a very simple request though and she's asked me to put it in the blog....... COOKIE is very, very thankful and appreciative for all of the wonderful gifts that everyone has sent to her. They have no more space to keep anything else with them at the hospital and she has more than most little girls could ever collect. She's asking that you send letters and cards and if you really must buy something, then buy a new toy and donate it to a Child Life Specialist at the Children's Hospital of your choice. COOKIE knows that she is extremely blessed with so many people that love her. She loves hearing from you all and wants you to know that she has all she needs to keep her occupied. She can't thank you enough for thinking of her, especially those of you that have sent such wonderful gifts and you don't even know her! THANK YOU TO EVERYONE THAT HAS THOUGHT OF COOKIE TODAY!

I guess I better close this for now. It's after midnight and I have to get an almost 5 year old to preschool by 9:00am! I hope this finds you all happy and well. Thank you so much for caring enough to read my words and get to know my family.

With love,
Cookie, The Grandma

COOKIE, Mother's Day Edition 5-15-06

Dearest Friends and Family,
Two things to start......
The baseball bat...It was presented to ERIC GAGNE at some benefit that UCLA was involved in. He didn't visit the hospital. It was actually a gift for him and the Child Life representative chose COOKIE to do the honors. She came back and told COOKIE that he was thrilled with the bat and that COOKIE would be his guest at a ballgame once she's recovered from her transplant. Thank you to those of you who kindly filled me in on exactly who "whathisname" was! Ha!

Mother's Day wishes....From our family to all of yours, we hope you had a wonderful Mother's Day!

On Saturday, Aunt Shannon, Parker and I took a little road trip up to Apple Valley to visit my two sisters. It was very warm, dry and windy up there and we were all blowing our noses a lot once we got back down to the familiar overcast dampness of South Bay. We did have a fun visit though. Parker was in heaven because he got to drive my sister's garden tractor all over the yard!

Once we got home we had to shift into high gear to get the family's laundry done and do the cooking for the Mother's Day breakfast we had planned. We were cooking up bacon and sausage and one of our favorite recipes, Corn Flake Potatoes! We got this recipe from Matt's mother and I think I've given this particular recipe out more than any other! Everyone loves it! We made everything except the eggs in advance. My next door neighbor came over for a cup of coffee and we put her to work too!

We left at 9:00am yesterday, swooped by the hospital entrance and picked Shelee up and took her to the motorhome. There, Mommy, Parker, Aunt Shannon and I enjoyed egg burritos, orange juice, potatoes, sausage, bacon and coffee. Matt had gotten Shelee some beautiful roses and a card and they were on the table in the motorhome when we walked in! Unfortunately, Daddy and Cookie were still at the hospital but even though everything we do these days is a little disjointed, we definitely work through it like a well oiled machine! (I AM really laughing out loud now!)
Honestly, though, it was really nice. We called Matt when we were ready to leave and he left COOKIE long enough to drive over to the motorhome. He and Parker planned to spend the next couple of hours walking through the Botannical Gardens at UCLA (which are spectacular!) and then going to the park.

We took a plate of food up to COOKIE who was patiently waiting for our return. I LOVE the part when I first enter the door of COOKIE's room and see her face. She melts my heart at first glance and my soul when I touch her beautiful face. She is doing the very best she could possibly do at this point. The graph vs. host disease is slowly beginning. Her skin is peeling and the tops of her hands are a little "rashy" and warm. They're watching her very closely. Her counts are still hovering at zero but they're going to move upward soon which means her body is doing all of the right things, welcoming it's newest bone marrow. Little by little, they're reducing the number of IV meds that COOKIE is taking because she is able to take them by mouth which is a very good thing and brings her closer to the "going home" stage. Her hands tremble and demeanor seems a little anxious but she's definitely doing well.

On this day, COOKIE is very sensitive and if she has a tear in her eye, even a happy on, or I should say ESPECIALLY a happy one, then we all have them in our eyes too. That's a given. I was so completely impressed with what she wrote in her mommy's card and when Shelee read it, we were all crying! She thanked Shelee for taking such good care of her and told her that she wouldn't change one thing about her mommy. Holy Cow. I can only hope my daughters feel the same way about me. I'm crying again. Hold on.

COOKIE began writing a journal, keeping track of the times she wakes up during the night to go potty to see if there's a "pattern". She cracks me up. She also began a "fun fact book" and she is so full of trivia that it makes my head spin. For every action she has a bit of trivia! She was licking an envelope and withdrew it to tell us that licking an envelope contains 1/2 calorie! Oh brother. Did you know that the Mona Lisa has no eyebrows? Did you know that if you chew gum when you're cutting onions, your eyes won't water? I have got to try this one! :o

COOKIE's little brain is working overtime. The steroids really stimulate her thinking and she is SO busy! I can't believe the amount of "stuff" she retains! And that brings me to the Mother's Day Yahtzee Open. Following my victory from the last visit, I was presented with "Yahtzee Queen" crown and I wore it proudly for the big playoff. All four of us played and I was absolutely NOT worthy of wearing such a beautiful crown by the end of the tournament. I relinquished my beautiful tiara to the unbeatable, unstoppable COOKIE. Mommy ran a close 2nd but still...come on...it was 2nd. With all of Aunt Shannon's moaning and groaning, she at least took 3rd and I graciously (huh!) came in last place.

I had a thoroughly wonderful Mother's Day with my daughters and COOKIE. It was time to leave. The big PUSH this week is button down all of the details of Parker's birthday party at the motorhome next Sunday. As luck would have it, Matt called to tell us that Parker had a full blown cold. We had hoped that his nose was bothering him, as ours was, from being in the high desert the day before, but apparently, he was getting a cold. We packed up our stuff and said our good byes and headed back to the motorhome to pick up our boy.

Daddy and Parker were waiting for us and relunctantly, Parker got in the car for the trek home, bumper to bumper 2/3 of the way South on our beloved 405 freeway. Parker was blowing his nose all the way home.

So, today, Monday, he's staying home from preschool and we MUST beat this cold or NONE of us will get to go anywhere near UCLA! COOKIE had put her order in for pasta and meatballs and spicy pork chops and white rice. Hopefully, I can drop the pasta off tomorrow but I won't get to see her. We can take no chances with her delicate state of well being at this point. She wants to see her brother so badly and we have a one hour window for that to happen next Sunday for his birthday. We're keeping positive, HEALTHY thoughts!

Of course, with all of our well planned adventures, everything always depends on how COOKIE is doing and every day there is something new. Can you believe it's been a month? Aunt Shannon is taking a couple of days to go home and take care of business. She actually left her position as a caretaker to "move in" with me to help with Parker. I'm so lucky to have her with me. We could never accomplish all that we do if we didn't have each other's help. We could never accomplish all that we do if we didn't have all of your help too. Thank you ALL for your generosity, for your love and for your support. It's a HUGE group effort and we will reach our goals....together.

FYI: Our wonderful neighbors are planning a Fundraiser Yard Sale, coming up within the next month. I'll keep you posted.

With much love and gratitude,
Cookie, The Grandma

COOKIE's World Up to Day +17

Dearest Friends and Family,
This is COOKIE resting with heat packs on her shoulders. She's our favorite quarterback! The shirt says it all!

It's almost a week since my last "report" but it's been a very busy week. For the most part, and as of yesterday, Friday, 5/12, Cookie was doing very well. Her week has consisted of a lot of pain management. She's had a lot of concentrated leg and neck pain. They've mixed her meds around and rearranged her pain meds to best suit her needs so hopefully she'll have some relief. So far, so good.

They're weaning her off of the nutrients as well. She's eating more by mouth and taking more meds by mouth. This is very good. Mainly because those are important steps that must be taken when it comes time to go home. So, with those things accomplished, her transition will be easier, whenever it's time. Can you believe it's +17 today? The time seems to be flying by, especially when you're at the hospital. It's a constant business and before you know it, it's dinnertime and you have to wait until 7:00 to even THINK of getting on the 405 South!

Aunt Shannon went up on Tuesday and spent the day. Cookie played her cds and they colored and laughed all day long. When Shannon got home she was so happy to report that they had such a fun day. Shelee called and said how much laughter there was. It's so good to hear because Cookie's nights have been difficult. Her pain coupled with having to go potty every hour, she hasn't been getting much sleep. Needless to say, neither has Shelee.

I went up on Wednesday. I hadn't been up there since the weekend. When I walked in the room, Cookie began to cry. She had had a very difficult night and was having a very sensitive day. She's homesick to boot. We convinced Mommy and Daddy to go out for a while. They went to find the nearest Target and get some birthday shopping done for Parker. Cookie and I watched the movie "Dreamer" with Dakota Fanning and got our Mother's Day cards all in order. Cookie actually ate some pork chops and rice that I had made.

Matt's new laptop came equipped with a morphing program and it's hysterical!! I haven't seen Cookie laugh this hard in such a long time. It takes your picture and distorts it in several different ways. We're trying to figure out how Matt can email the pics to me so I can share some of them. We took MY picture and it was the funniest ever! (Sure, pick on the old lady.) The nurses had to come in to see what we were laughing so hard about. It was SOOOO funny!

We had taken some video of Parker from the night before. He did HIS rendition of American Idol and some personal footage for Cookie. It's the best footage we have of him and it was so funny! I gave Cookie the camera to watch it and she was crying so hard. She misses him so much. He IS the next ELVIS!

Thursday evening Shelee was complaining of a toothache and it was the kind of ache that wasn't going to go away on it's own. I had just gotten off of the phone with my sister and told her how wonderful everything was. Then Shelee calls and tells us that Cookie spent the entire afternoon on Thursday in pain and that she was suffering with a toothache. So, Friday morning I went out to UCLA and Shelee and Matt came into town to go to their dentist. He was taking the day off but came in just for Shelee. He was the only one there. We have a great dentist.

So, I got to spend an unplanned day with my girl. Shelee and Matt didn't leave until after the doctor's came. They're very pleased with Cookie's progress. She's definitely showing some signs of graph vs. host disease but they seem to be minor. Her mouth sores are completely healed already. Her hands and feet are peeling but they have this cream that's the very best stuff I've ever seen! It keeps the skin so soft! I want to soak in it!

Cookie asked Dr. Moore if Parker could come up and see her on his birthday. She could hardly ask the question before she was crying. Well, even if he WAS going to say no, how could he now? Thankfully, he wasn't going to say no. He said of course Parker can come in as long as he isn't sick and hasn't been around anyone that has been. Well, he's 4 (almost 5) and in preschool 3 days a week. So, he can wash up really, really well, wear a mask and stay for an hour. Dr. Moore said he would make sure the nurses were aware of it so they wouldn't stop him coming in. Cookie is very excited! She wants to see his beautiful face and hug him and she wants to be the one to hand him his birthday gifts from her. I don't think that's asking too much, do you?

So, Mommy and Daddy left for the dentist. Cookie and I did a craft, did a coloring puzzle, and, you guessed it, played Yahtzee! I told her I was feeling lucky but because of my sorry past history with the game, she didn't listen. I beat her time after time. We played for hours. It was a monumental breakthrough in the world of Yahtzee competition! We also listened to all of her cds and so we raised the roof a few times!

by the end of the day, we were both tired and happy. Mommy and Daddy returned and the evening routine began. Every night Shelee bathes Cookie, changes her bedding and changes her dressing on her broviac. I've never seen anyone stay as busy as Shelee does in that room. It's immaculate with everything in it's place. I love how she does things.

I'll close by saying that every day presents it's own set of new challenges but I think that's true in everyone's lives. Ours are just more magnified these days. We're all settling in to a routine that "gets the job done" in order to bring us to our ultimate goal of bringing Cookie and Mommy and Daddy home.

Cookie asked me to include this little paragraph in my next blog. This is from her to all of you......
"I would like to thank everyone for sending their thoughts and stories to me. It's been a lot of fun reading each of your 'blogs'. Thank you very much for taking the time to write to me. I really appreciate it."

Take care of yourselves and give your loved ones an extra hug today!
Until next time, with love,
Gloria COOKIE Warren

COOKIE's Great Cinco de Mayo Update

Ola mi amigos y mi amigas y mi familia!!!!

What a GREAT Cinco de Mayo weekend we had! What a strange way to start an update on COOKIE's blog but who cares? The weekend was the best we've had in a month and I feel like writing about it, not necessarily in Spanish though. Let me digress.....
First of all, I didn't even remember it was Cinco de Mayo until 6:30 Friday night at the grocery store and the checker said something. Ay Carumba!

Remember when I said the only thing you can be sure of is that everything will change? Well, it couldn't be more true, especially these days. Why, you ask?

Because COOKIE is doing so great right now!
Itching? Under control......mostly.
Fevers? Under control.......mostly.
Pain? Under control.
Mouth sores? A thing of the past.
Hair still falling out? Who cares?!
Blood pressure? A little elevated but then it goes back down to normal. It's another side effect due to the meds (steroids). Speaking of the steroids, COOKIE is starting to fill out a little bit. She's getting nutrition by IV and the steroids also stimulate her appetite a little bit so when she has a craving for something, we run over each other trying to get her what she wants. The steroids also give her little tremors and make her a little anxious but she's still quick to laugh and make jokes.

As a matter of fact, I can't believe how much we laughed this weekend, OUT LOUD LAUGHING like we haven't done in over month. Tomorrow marks 21 days in the hospital and today marks Day +11. Time flies when you're having fun!

Matt has the three of them completely set up in their room! "Mr. Technology" has his laptop all wired up so we can Instant Message any time we want to. He's got COOKIE's DVD player all wired up to their VCR and television so they can watch DVD's, not just VHS movies. He's got some GREAT games on his newest laptop and COOKIE loves playing them so she's on one bed playing and he's on the other bed with his other laptop. It's a techno world and we're on the cutting edge with Matt to help us out!

Saturday we got up to the motorhome about 2:30pm. We unloaded Matt's clean laundry and our bags because we planned to stay the night in the motorhome as long as COOKIE was doing well. We drove over to the hospital. Shelee and Matt came out, we hugged and kissed, and I went in with my bags o' goodies! Upon COOKIE's request, I was delivering her most favorite mashed potatoes and meatloaf meatballs! I had cake and licorice and clean laundry for her and mommy! She was so happy to see me and I was busting to see her! There she was sitting in the chair playing a game on their Game Cube machine! We colored, we laughed, we played Yahtzee. That's right. Yahtzee. She slaughtered me! The third game left me with the worst game of Yahtzee I've ever played. Disgraceful. So, I fixed COOKIE a plate of dinner and asked the nurse to heat it up. You have to ask the nurse to heat up anything that requires a microwave. A bit of a pain but if that's the way it is, oh well. So, happily I watched as she ate her meatloaf and mashed potatoes.

Mommy, Daddy, Aunt Shannon and Parker all went to a very popular store that left Parker in 7th heaven! It's a HUGE train store that one of the nurse's had told Matt about. They were there for hours! They came away with a birthday list for Parker, a conductor's hat for Parker, a new Thomas video for Parker and lots of excitement, mostly for Parker! If you haven't guessed, Parker LOVES trains! He's definitely got his birthday list planned out now!

Then they all went to dinner at Jerry's Deli right there in Westwood Village. The menu at this place is pages long and it offers simply everything a real deli should offer and then some! They had a really good time. They went back to the motorhome and Mommy gave Parker a bath and got him settled in for the night. They got back to the hospital about 9:00pm.

Shelee still had to give COOKIE her bath and change her dressing but we had all had such a good day that it didn't matter if it was late. Matt walked me out to my car and I went "home" to the motorhome. Parker and Aunt Shannon were all ready for bed and cozyily watching a movie! Guess which one? We've been watching Chitty Chitty Bang Bang ever since Parker got it for Easter!

Daddy didn't get in until almost 1:00am and fell into his little cubby hole, which is where he sleeps when we're all there. He was up and on his way back to the hospital by 7:30am. I swear I don't know how he does it. He functions on so little sleep. I don't know what we'd do without him. He makes all of our lives better by making sure we're all okay. Gotta love our Matt.

At 8:30am the next morning, as Shannon was trying to unlock the motorhome door to go out, Shelee was trying to unlock the motorhome door to come in. More laughter. She came to have coffee with us while Matt and Cookie were waiting to watch the movie "HOOT" which the hospital was going to show in all of the rooms at 10:00. So we had got to have coffee together and Mommy and Parker got to lay down in Daddy's cubby hole and we all talked and laughed the morning away. We finally got up, got dressed and went to Chenny's for breakfast.

When we got back to the hospital, Daddy came down and he took Parker to their favorite park that's just a block away. (If I haven't mentioned it before, Parker doesn't go into the hospital anymore. He's considered a little germ machine so we make the "switch off's" in the parking lot. We pull up to the doctor's level and make the trades. It's a very covert operation.)

Mommy, Aunt Shannon and I went up to the room and there's our girl, sitting in the chair, coloring. She'd had a great morning with her dad and we were ready to do crafts, color and play games.

One of the nurses came in and told us that the stars of "HOOT", the movie that COOKIE had watched in the morning, were coming to say hi to some of the kids. The childlife specialist brought them in, they all got in line, washed their hands and came by COOKIE to take a picture. The 3 stars of the movie were very sweet and COOKIE had her eye on the blonde boy but the dark haired boy had my vote when he came to up to Shelee, Aunt Shannon and I and shook our hands and told us it as a pleasure to meet us. There were a couple of other little "movie stars" with them, stars of "Zoey 101" from Nickelodeon and one of them remembered meeting COOKIE before, and the stars of a movie called "Shark Boy and Lava Girl". All beautiful young people doing something very nice for the kids. More pictures for COOKIE's Celebrity Wall.

One of the childlife specialists had left a baseball bat that several of the kids on the floor had signed. She had decoupaged (sp?) Cookie's picture on it and asked her if she would "bling it out" with glitter and stuff. A famous baseball player, Somebody Gagnier, was coming to the hospital to visit on Monday and she asked COOKIE to be in charge of the baseball bat that they were going to give him. I know I've heard of him but I don't know who he plays for or what his first name is. For you baseball fans, please forgive my baseball ignorance! So I jumped right in there to help her get the job done. Here we are with COOKIE sitting the chair between the beds, me on one bed, Aunt Shannon on the other bed and Shelee standing, facing COOKIE. Aunt Shannon is working on a puzzle COOKIE gave her. She gave it to me to do the night before and I did just, well, so so. Shelee, Cookie and I were decorating the bat. I'm turning the bat and CLUNK! I bonked COOKIE in her beautiful, blonde, bald little head! I was mortified, she was embarrassed and Shannon and Shelee were in shock! COOKIE started to cry, I DEFINITELY started to cry, Shelee started to cry and Aunt Shannon got out of the way. She wasn't hurt too badly but it did leave a little red mark, for which we immediately put a cold pack on but I couldn't stop crying! I couldn't believe I had done that! Ohmygod! I BONKED COOKIE! She was crying, laughing and trying to make ME feel better! What a fiasco! We all laughed until our tummy's hurt. Then it was back to business. We finished the darn bat for whathisname and moved on to playing a new board game.

A good friend of mine had sent her a game called Cranium Whonuu or something like that. It's a blast! We got it out and the four of us were roaring with laughter. Funny, funny game! I'll check the name for anyone that's interested. We had a lot of fun. If there were ever four females that really knew each other, it would be us. Then we broke out the Yahtzee. Yes, Yahtzee. Shannon was complaining about never winning games and she walked away the big winner. One game was all my delicate constitution could handle at this point.
Need I say more?

Next we moved on to planning Parker's birthday celebrations. Parker's bday is 5/22 and it's on a Monday so he'll be at school. We're planning a little bday party for him at the motorhome with decorations, cake and presents. Depending on how COOKIE is doing, Parker may get a special pass to go see her so she can give him a birthday hug and the gift she has spent so much time planning for. HER gift to him. It's very important to her. We're just hoping she's doing well.

As far as the bone marrow "roadmap" is concerned, we're looking a couple more weeks before COOKIE's body actually begins "engraphment". (Not sure about the spelling.) This means when her body actually begins to produce white blood cells and bone marrow. We'll know when that's happening because it's what causes the dreaded "graph vs. host disease" that we've heard and read so much about. The effects will vary and we're praying that COOKIE's body will simply say YA HOO!

Well, that does it. We left about 5:00 to go back to the motorhome and pick up our Parker Boy. He had a great day with Dad at the park and was ready to go home.

Aunt Shannon and I couldn't believe how much we laughed and how good it felt to be laughing with Shelee and Cookie. We'll take it as we get it.

I hope YOUR weekend was filled with laughter and love.
Gloria COOKIE Warren

COOKIE, Day + 8

Dearest Friends and Family,
Here we are, Thursday, 5/4/06. The roller coaster ride continues. We're up, we're down, we're up, we're down. The only thing we can be sure of is everything changes. Such is life, right?

We have fevers, high ones up to 104, rashes, pain and a lot of it, mostly in the joints, infection (yeast), mouth sores, diarrhea, stomach pains, BUT NO MORE VOMITING, at this particular point in time. Her peach fuzz is falling out now too. Eyelashes and eyebrows were pretty scarce anyway but they're almost all gone again.

Some days are bad all day long and some days Cookie gets a break and can sit up in bed and color, play games and laugh. As soon as the worst part of the day passes, whenever that may be, she's ready with a joke or a smile.

It can be frustrating because some of the meds she's on cause these problems and they can only so much to prevent them because she has to have the meds she's on. Make sense? It doesn't help at all that she has zero counts so she has nothing to fight off these bad things. Frustrating but it's all expected. That's the good news.

Cookie was suffering with a 104 temp and she was in a lot of pain the other night. They were up all night long trying to get her fever down and keep her comfortable. The next morning, Shelee noticed that one of Cookie's diamond stud earrings was missing. They looked in the bed and when Cookie sat up, there it was.....WITH THE BACK STILL ATTACHED! Dont' try this at home!

We figured she must have reached up and taken it out by herself, in her sleep. It was pretty amusing! Her beautiful little ears are peeling and itchy. Oh yeah. That's another little tidbit that she's dealing with, itching, all over, all the time. She's on meds, round the clock, to help the itching but the only thing that really helps is scratching. You can see that this is a vicious cycle. We're constantly telling her to stop scratching. It must be maddening!

I did get to spend some time with her yesterday. She was having a pretty good day. I got up there just after lunch and we play some more yahtzee. Cookie won one, Shelee won one and YES!! I won one! We quit after that because I needed to gloat in my victory! Uh uh, Oh yeah, I WON!!!

Discovery Arts came to UCLA yesterday! They are two amazing women that we know from our beloved Miller Children's Hospital and they now are contracted to come to UCLA once a month! They bring STUFF, costumes, music, dancing shoes, crafts, tiaras, hats, jewelry, laughter and fun! They come to Miller's every Thursday! When we got to UCLA, they told us that Discovery Arts was new for them and that they knew all about Cookie way before we got there because of Mary and Marilyn! They really get the kids smiling! They brought Cookie a huge box of crafty stuff, jewelry and the like! It was thrilling to see such loving and familiar faces! I'm so glad I was there on this particular day!

Well, I like to say the fun never ends. Matt has the VW Beetle at the motorhome with him and I'm driving the Expedition. Thankfully, Shannon is here with her car too! The VW seems to be ailing and Matt barely made it back to the hospital after taking Wednesday afternoon to come to Torrance and surprise Parker by picking him up from school! So this morning, we had to go back to UCLA where the motorhome is, call Auto Club and have them tow the VW back here to Torrance to the dealership. Hopefully it's nothing REALLY major. Meanwhile, we left Shannon's car with Matt so he can get around when needed.

I like to say the fun never ends.

Well, folks, as of this writing, Cookie is having a so-so day. Mommy woke with a headache at 3:00am so they're keeping it on the down low today. Please continue to keep us in your thoughts and prayers and we can only hope that all of you and your families are thriving.

With love,
Gloria COOKIE Warren

COOKIE et al Update 05/01/06

Dearest Friends and Family,
Today is +5 and counting to 90 days. That's the approximate length of the hospital IN PATIENT stay, knock on wood or cross your fingers or throw salt over your shoulder. Whatever works to keep us within the boundaries of "right on track". So far, so good. It's easy to say "We're doing fine and everything is going as expected." but it's absolutely not easy to actually live it.

In the past, over the last 8 years of COOKIE's battle with Leukemia, we've tended to stay in a sort of cocoon, just going through the motions of getting through the days and not allowing anything or anyone on the outside in so as not to upset the delicate balance of our determined purpose....getting through the treatment for COOKIE as best we could and looking forward, one day at a time. This time though, it was different. This relapse was bigger than just our little family could cope with by itself. Emotionally, financially and physically it would be the most challenging of all and we knew it right away. We opened up our minds and our arms and our hearts to all. We have not been disappointed. We have been inundated with support, with love, with prayers and good wishes. We've been humbled beyond our wildest expectations by the strength and devotion that so many of you have shown us. We're so grateful. Please know that.

With all of this exposure comes a certain amount of responsibility and that's where the little updates I began writing came in. I thought it was a good way to share COOKIE's progress with the masses. It's just not possible for me to speak to each and every one of you and relay our progress on a daily basis. I never dreamed it would turn into a "blog" where people are actually emailing me to remind me to start typing and get another update on there! I'm very thankful that you're all accepting my updates with such gusto!

Sometimes, it's very difficult to write about. This has been an extremely difficult few days. My emotions and empathy for my granddaughter run very, very deep and I don't want to include all of the negatives in my writing but it's difficult to write an update and not talk about the strain, emotionally and physically, that this ordeal is putting on all of us, especially COOKIE. I will begin this update by saying that as of this writing, COOKIE is doing better. THANK GOD.

Every step of this treatment has a delayed reaction and it takes time for the effects of the radiation and chemotherapy to actually leave COOKIE's body, especially considering the extreme doses she was just given prior to the transplant. So, that's what she's been dealing with. She's been in a lot of pain and discomfort for various reasons but it all seems to be under control at this time. She is feeling much better and some of her maladies actually seem to be healing. She is completely at zero counts which means she has no immune system. She received platelets a couple of days ago. It looks like she'll be getting platelets again today.

I actually spent the day with her yesterday and Mommy and Daddy spent the day with Parker. Cookie and I colored and colored and then she slept for most of the afternoon. Then we colored again. Forget Old Maid and Yahtzee! I can't lose coloring! Ha! Matt took Parker to the park and to lunch at "Chenny's", which was an ordeal in itself. UCLA hosted a BOOK FAIR yesterday and there was absolutely no place to park anywhere in the Westwood area! Matt finally had to park the car at the hospital and walk down the hill to Denny's. Of course, what goes down the hill must come up so he and Parker had to trudge all the way back up to the hospital. Thankfully, he was pushing Parker in the stroller, the one that he's way too big for, but they never would have made it otherwise. Shelee went down and met them and they walked to the campus side of UCLA to go to the Book Fair. Then, they grabbed dinner and went to the motorhome to eat.

The nurse came in while COOKIE was sleeping with one of her evening doses of medicine that she takes by mouth. They mix it with strawberry syrup so it's actually edible. She announced they were out of strawberry syrup. I called Shelee and they had to stop at the store for strawberry syrup. I said "No strawberry syrup on the entire floor?" What about all of the other little kiddos??? Anyway, mission accomplished. Shelee found some syrup and brought it up to the floor.

Can you imagine? 8:30 on a Sunday evening and it's bumper to bumper on the 405? Amazing.

Until next time, we wish you and yours health and happiness.
Much love,
Cookie, The Grandma