COOKIE - Better late than never........01/29/07

Dearest Friends and Family,
Happy New Year? It's only January 29th so I guess it's still okay to say that! Are you used to writing "2007" yet? SO sorry I haven't been keeping you all up to date on the goings-on of the Sheehey/Warren Gang but it's been a busy month. That's my story and I'm sticking to it! hahahahaha.

I hope this BLOG finds all of you in good health and spirits. The adjustment of going back to work and school after all that time off is difficult. Since Matt is a teacher, he's off for two weeks at Christmas, just like the kids. I will tell you that our holidays were wonderful and very, very busy! I can't believe where this month has gone!

I'll start with COOKIE. As is natural for our little turtle, she is slowly and surely recovering. The doctor's continue to be pleased with her progress, however slow it may be. She is down to 2.5mg of Prednisone every morning and that's a GIANT step! Tomorrow is UCLA day so we'll see if they'll reduce it even more. Reducing and eventually removing the steroids is the first hurdle for her to overcome in her recovery but it doesn't come without a price. She's losing weight very rapidly because she's simply unable to eat. She has zero appetite and it's a chore to get her to take a couple of bites of this or that. Her meds have been reduced enough that during the week, she has about 5 pills in the AM and a couple in the PM, except on the weekends when she has about 15, both AM & PM. This does not make her a happy camper but she gets herself through it with a little coaxing from her coaches. Again, hahahahaha.

For an extra added worry, she has an infected ingrown toenail on her right big toe and will have to have it removed by a podiatrist, hopefully tomorrow at UCLA. She's been suffering with this thing, taking antibiotics and everything, with no relief.

In the meantime, Parker has been battling with allergies and congestion all month. When they get so bad he gets a fever, it's all over for Shelee. He sleeps with her so he isn't in the same room with Cookie and she's up all night. He runs a 102-103 degree fever for at least a day or two. Next stop.....ENT doctor.

And the fun never ends. A couple of weeks ago, Shelee's laptop dropped out of her hands and onto the top of her right foot. It swelled up to the size of a tennis ball immediately. Matt took her to the ER where it took two radiologists to decide if it was broken or not. It wasn't but she was incapacitated for a couple of days, on crutches. Just a couple of days ago, she was able to put on her flip flops. The swelling is gone but it's still pretty tender on top.

In between all of this, we did manage to entertain my other granddaughter, Ashley, from Reno. She's also 10 and we took her everywhere that Cookie was allowed to go! I think she had a whirlwind week with us because we kept all three kids busy with Build A Bear, Rainforest Cafe, Kid's Museum of Science & Industry, the movies, pizza on the pier, bikeriding and of course, "Dance, Dance, Revolution"! Cookie got it for Christmas and the two of them danced their little tushies off. Of course, Shelee and I gave it a go! Lots of laughs and lots of exercise! For those of you that don't know what it is, it hooks up to your Play Station Two and it has two mats that you dance on. You choose the level you want and the music and you follow the arrows on the tv screen. Sounds easy? HA!!!! Cookie holds the record so far. Shelee has become a little rusty with her foot dilemna but she'll be back! :-0

Cookie was able to speak at two schools so far this year for the Pennies for Patients Campaign from the Leukemia & Lymphoma Society. She spoke at Parker's school, Fern Elementary, on January 8th and it was really special because Parker was in the audience. He was very proud of his big sis! All of the little kids think of Cookie as a celebrity and she can hear them say "There's Miss Cookie!" as she walks by! It's adorable! She also spoke at Walteria Elementary, where our beautiful friend Diane is the Principal. It was big audience but they were very friendly and Cookie did a great job! She'll be speaking to her biggest crowd yet at Downey High School on February 15th. They have over 3,000 students and this year they're making it a mandatory assembly so there will be two separate assemblies, 1500 students each!!! Very exciting!

Well, it took me all of yesterday to get some new pictures downloaded and to choose the ones I wanted to include on this blog. In the meantime, Shelee and Cookie came home from UCLA and it was another reality check for all of us. Just when we start feeling as normal as we can with Cookie's recovery, we hit a little bump in the road. They're very concerned, as always, with the length of time she's been on some of her meds. Her nausea and shakiness are side effects. As with any prolonged useage of strong medications, there are other side effects. Cookie had a cat scan of her head yesterday and it was very unsettling for Shelee because she wasnt' quite clear on what they were looking for. After they returned home, we waited impatiently for a phone call from their trusted doctor. He called in the late afternoon and said everything was ok. They were actually looking for fluid on the brain because prolonged useage of one of her "tough" meds can cause this. As a result, all of her medications were rearranged, yet again.

The doctor explained that it seems like one step forward and three steps back, but some kids take a little longer and they must continue to "juggle" the meds around to keep her covered so she doesn't experience "graph vs. host disease" that we discussed many episodes ago, if you recall. Some of Cookie's tummy problems are possibly a result of some "gvh" but they're doing their utmost to keep her comfortable.

She was almost down to NO steroids but we're starting over again in order to give her big boost to improve her appetite and well-being.

All of this reminds us of Cookie's vulnerability and we are not yet "out of the woods", so to speak. Actually, it reminds us of our own vulnerability. You realize that everything can change in the blink of an eye. We've been there every time she relapsed with leukemia. A routine doctor's office visit can turn into a complete nightmare that you have to wade your way through. We've been fighting this battle for such a long time and it's still not a winning fight at this point. It's so difficult, at times, not to just fall down and have a good fit. Sometimes I think it would be healing. I speak for myself but I think I can speak for Shelee too. Temper tantrum, anyone? I'M IN!

So, forward we go and the next step is an MRI to make sure that there aren't too many changes. They did see "some" changes in her cat scan. We're waiting for our girl's beautiful little body with the new DNA to just kick in a little harder and a little faster. It's doing well on many accounts but there are just enough levels left that her body isn't doing it's "own" thing on that keeps us on our toes.

Well, with all of that said, please don't forget to include us in your prayers. I know your lives are as busy as ours is. As always, we're deeply grateful for your love and support.

As ever,
Cookie, The Grandma