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