COOKIE...Moving on......09/19/06

Dearest Friends and Family,
In the spirit of plugging along, I'm here to tell you that Surgery Day last Friday was a very, very long day. After much delay at the hospital, (surgery was scheduled for 7:30am, then 10:30am, then 1-1:30pm)Shelee called me after leaving COOKIE in the O.R. at 2:30pm. COOKIE was safely fast asleep and the they could proceed in finding a vein to put her IV in. After about an hour and a half, Shelee was able to go to the Recovery Room and stay with COOKIE until they brought her up to her room on the third floor.

They removed the old broviac and "installed" a brand new unit called a PICC line or a "pick line" in her right upper arm. It's covered with a special ace bandadge, with lines for drawing blood and receiving transfusions, just like the broviac.

The family got home about 8:15pm on Friday evening. There's a lot of soreness and bruising as expected after having surgery on both sides of her beautiful, delicate body.

Saturday found her lazing about and regaining her strength and by Sunday she was fully up to painting ceramics and playing Lego's ALL DAY LONG!

Monday brought the new Home Health Care nurse to answer any questions about the PICC and to draw blood. She's a very competent woman and everyone felt very comfortable with her. She was very helpful and COOKIE feels confident. That's the important thing.

Next came COOKIE's new home Teacher. What a jewel! She will be tutoring COOKIE for her 5th grade year, three times a week. She had already heard and knew about her and was very excited to be chosen to be COOKIE's teacher. We were all equally as thrilled about her!

We felt very lucky to have these new women come into our home and be just the right mix of professionalism and friendly that suits all of our needs! It feels like we're all able to "move forward" just a bit and get on with the business of recovery.

FYI....Parker is SO HAPPY with school! You can already see the growth! We're absolutely tickled PINK that he adapts so very well! He's very specific on how and when we take him to school and what the protocol is. He's very sad for the kids that get their markers moved to the "caution" box. He wants no part of that. So far, so good.

Well, we're facing a very sunny and positive week with a renewed sense of power and success. This is very good. We wish the same for each one of you.

With love,
Cookie, The Grandma

COOKIE- Surgery Delay 09-13-06

Dearest Friends and Family,
Yesterday’s surgery did NOT happen. We went to UCLA last Friday so they could “poke” COOKIE for some blood. She hasn’t had any labs drawn because of the problem with her lines, remember? So, after three tries (and much distress on all of us) they got their labs drawn. COOKIE’s veins are poor due to all of the chemotherapy over the years.

Originally, it was planned to remove the broviac and replace it with a less invasive device. Due to her weak veins it was decided to replace it with another broviac. So it’s off to the O.R. on Friday. They will give her gas, initially, in order to put her to sleep while they find a vein for an IV. They will give her deep sedation and perform the surgeries. It’s still our plan to bring her home on Friday evening.

Just wanted to keep you all updated. Thank you so much for your kind thoughts and wishes. FYI…in the meantime, she’s doing very well except for a couple of hiccups such as lack of appetite (except at dinnertime) and her little ankles are swelling. Otherwise, all is well and she’s on track per the awesome team of physicians and nurses in charge of her recovery!

With love,
Cookie, The Grandma

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