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