COOKIE - DAY One Hundred Thirty-Four

Dearest Friends and Family,
Well, we're into the 4th month post transplant and our girl is in a very delicate state as we speak. She's the consummate optimist and persistent activist to get to the state of health that she desires but we've encountered a few little roadblocks along the way.

To begin with, COOKIE's double lumen broviac has had just about all the abuse it can handle. It has decided, on it's own, to quit working. What this means is the lines that they use to draw blood from and give transfusions in are no longer cooperating. COOKIE is being scheduled for surgery on Tuesday, September 12th, to remove the broviac and have another type of device "installed" to assist her throughout the remainder of her recovery. This will prevent the search for veins every week and allow for transfusions with absolutely no discomfort to COOKIE, once the surgery is performed. Throughout her almost 9 years of treatment for Leukemia, COOKIE has had a total of four intravenous access devices. They actually wear out and it's completely understandable considering the tasks they perform.

COOKIE's medications are being slowly tapered down and she's beginning to feel the effects of it. She's almost completely lost her appetite and is very nauseated at the smell of certain foods. She lost about 4-5 of her steroid pounds already because she has such a difficult time forcing herself to eat. About every other day she's better but still with a reduced interest in food.

Currently, the symptoms of graph vs. host disease are trying to peek in because of the reduction of steroids. The doctor's are very happy with COOKIE's progress and are watching her very closely so as not to allow the disease too much leeway. It's such an intricate balancing act and is very closely monitored. COOKIE's body is producing it's own red and white blood cells and platelets and her counts are actually in the normal levels which is AWESOME.

In the meantime, she's completely immersed in her Tamagotchi and Nintendo DS. She's been a very good friend to HER best friend that just started Middle School and has been very supportive and excited for her brother, Parker, who started Kindergarten today. She got to go into his classroom, along with the rest of his entourage (Mommy, Aunt Shannon and myself)! She walked him to his seat and stood behind him, whispering in his ear and giving him positive reinforcement. Not that he needed it! He's as much of a trooper as she is because he's had such a great role model of strength! COOKIE is all about love and understanding, encouragement and optimism. Always. I SO want to be like her someday.

Well, I'll close for now. We'll be going to UCLA tomorrow to get a handle on her symptoms. Wishing all of you and your families the best of health and happiness that you can muster!
With love,
Cookie, The Grandma