COOKIE - Closing in On ONE YEAR ANNIVERSARY! 3-28-07

Dearest Friends and Family,
SOOO much has happened since we last "met". I'll try to summarize and bring you all up to speed.....Now let's see.........

The bday weekend was wonderful! The sun was shining on us the entire weekend! We shopped till we dropped, went to the movies and saw "Bridge to Tarabithia" (where we all cried, including Parker), ate at Red Robin, California Pizza Kitchen, and P. F. Chang's, rode the ferris wheel and the train and just generally had a really good time. COOKIE got a $100 Visa card, all her own. She thought that was really cool. She's such a good shopper that she still has money left on her card if you can believe that! Parker did pretty good, considering he really does not enjoy shopping. Daddy and Uncle Christopher kept him busy. On Saturday, they left the mall early and took Parker back to the hotel to go swimming. He LOVED that!

When we got home, we ran over to Baskin-Robbins and bought a couple of little ice cream cakes. Our neighbors came over and we all sang "Happy Birthday" and closed out the bday weekend with a bang.

Thankfully, COOKIE was able to get through her special weekend feeling pretty good. Her headaches had become more frequent and the doctor's continued to juggle her meds.

The following Wednesday she gave a Pennies for Patients speech at Madronna Middle School. COOKIE knows a handful of kids that go there. This is the school that she hopes to go to in the Fall, as a 6th grader. She was more nervous than any other time she's given a speech. She was a little intimidated speaking to her peers. She has no problem speaking to the elementary schools and no problem speaking to the high schools but she felt that her own age group would judge her differently. Well, I have to say that it was one of the best speeches she ever gave. (Do I always say that?) I am constantly in awe of this little girl and what she's capable of. She got up in front of these kids and told her story with feeling and passion and they felt it. A couple of the teachers were wiping their eyes and a group of boys actually stood up and gave her a standing ovation...TWICE!!! Afterwards, the kids literally swarmed her, wanting to touch her and get a high five or a handshake. She was beside herself with giggles and smiles! These kids couldn't get enough of her and her story. They made her feel very special and accepted. It gave her just the added incentive she may have needed to think about joining them in the FALL.

If that wasn't enough, our dear friend Clare, from the Leukemia Society was there with us and had brought a friend of hers named Risa, a child psychologist, who wanted to spend a few minutes speaking to COOKIE after the speech. We all went and sat at some tables and she was just asking COOKIE questions about how she felt, well, being COOKIE. You could see COOKIE searching for just the right things to say when suddenly, she began to cry. It caught us all off guard for a moment, and then it made perfect sense. COOKIE gets through EVERYTHING by NEVER looking back, NEVER dwelling on the unpleasant, NEVER complaining and NEVER expecting anything less than success. She constantly, through not just necessity but stamina, puts one foot in front of the other and carries on. She's so completely inspirational to all of us close to her and we can only HOPE to follow her lead. In that moment, she was being asked to digress and explain some of the negatives. It hit her without warning and came to the surface. Risa was very sympathetic and apologetic. Shelee immediately got up and came around to COOKIE and took her off to the side. Once she returned to the table, she was composed and smiling and the conversation continued in a different direction. It turned out to be a very pleasant visit. Parker had a blast because Clare played chase with him almost the entire time!

COOKIE's headaches persisted, along with some nausea. Her special Dr. Sam vowed to get to the bottom of it, stating a couple of different scenarios. And so she was scheduled for a spinal tap, something she hasn't had to undergo for over a year. When she was fighting leukemia, she had them routinely, but not since her transplant. Which, by the way, is almost ONE YEAR AGO! They were actually admitted April 17, 2006 and had the transplant April 26, 2006. Can you believe it? We can't. In some ways it seems like forever-ago and in other ways, it seems like yesterday. There are some things in life that remain fresh in your mind. Understandably, this period of time is one of them...for all of us.

So, yesterday (Tuesday, 3-27-07), COOKIE had a lumbar puncture. Let me go back a second.....to give you some idea of what we were facing. The doctor's don't give you too much information, nor do they actually spell out the negatives. After having been through the last 9 years, we pretty much know what's at stake. One scenario is a viral infection that some post bone marrow transplant kids get. It can be treated by meds. Another scenario is that COOKIE's little body just isn't adjusting to the Tacrolimus (remember I spoke of that last time?) and she would have to try something else which would mean starting her medicine regime all over again. One more scenario would be her sinuses acting up again. If you remember she had sinus surgery right after her transplant. And, of course, there are worse case scenarios that I refuse to go in to at this time.

With all of that said, Matt, Shelee and COOKIE left for UCLA at 7:00am, leaving Parker and I blowing kisses at the front door. As I do on every Tuesday, I took Parker to school and went about running errands, mostly to make the time go by. Shelee called me about 11. They had been there for 3 hours and were still waiting. It's a mystery how they run things at UCLA. We're constantly shaking our heads in frustration but bottom line, they know what they're doing and we're just small participants in the grand scheme of UCLA. COOKIE was hanging tough but getting hungry and thirsty. She had to go without food or drink until after the procedure. Finally, about 2:00pm, she had the procedure and was doing well, sitting up and eating rice cakes. They completely sedate her and, once the procedure is complete, they give her something to reverse the sedation. She's wide awake and chatting away.

Next, they had to go downstairs for a sinus cat scan. Dr. Sam was leaving no stone unturned.

In the meantime, I picked Parker up from school at 1:45. I completely forgot it was his Chess Club day and I wasn't supposed to be there until 2:50 but once he saw me he said, "What are you doing here, Grandma?" I was a little surprised and said I was there to pick him up, of course! He reminded me about Chess Club. I said, "I'm sorry, Parker! I'll come back in an hour so you can go to chess." He immediately began to cry and hug me and said "I thought you were her for special!" Well, being the "by the book" kind of grandma I am, I simply stated "OH PARKER! I AM here for special! Let's go!" So, with his arm around my waist and mine around his shoulders, we marched out the front gate, got in my car and went down to the beach to see the beautiful ocean in the wind. This kid just slays me. He is so intense and there's so much he "sucks up" and deals with. He hears and sees everything we're all going through and then we try to carry on and make sure his little world maintains normalcy but in all actuallity, there's no way that it can. He adores COOKIE and worries about her and speaks about her openly to his teacher all the time. He's learned from the best, that's for sure!

Another fine example of Parker's heart....
Throughout the school year, when someone sees one of the kids doing something nice, something helpful without being asked, they're awarded a "GOTCHA". All GOTCHA's go to the office, into a box, and once a week the office pulls one out and calls that child into the office to pick out a special prize from the treasure chest. Parker has received numerous GOTCHA's throughout his kindergarten career but has never gotten his named pulled. Last Friday, he got his named pulled. We just happened to be parked in front of the school, waiting for the gate to be opened to pick him up. We saw him come out of his room and walk to the office. We watched him come back with a prize. Once the gate was opened, Shelee and COOKIE went in to pick him up and he gave COOKIE his prize. He had chosen a Littlest Pet Shoppe toy for his sister. Awwwww. The kid's good, I tell ya!

So the family finally gets home at 5:00pm. Long day. All three of them are hungry. Good thing they have a live in cook! hahaha

Dr. Sam called last night with good news. Our worst fears can be put aside and we can breathe. The fluid they took from COOKIE's spine is clear. Now we're will wait for the results of the cultures and that can take up to a week. We should have the cat scan results today. With all of the results in hand, we will given direction for treatment of either the virus or sinus infection that COOKIE's suffering with.

She had a good night's sleep and says her back is still feeling numb. Her spirits are good and we're ready to move on....again.

Well, I've gone on long enough. You know this is my favorite subject and I can go on if you like. Just kidding. Get back to whatever you were doing and remember, we're grateful for all of your love and support throughout! Until next time,
with love,
Cookie, The Grandma