We hope everyone enjoyed their Thanksgiving as much as we did. I apologize that it's been a while since we've updated the website. She continues to go to the clinic every few days for bloodwork. We're thankful she hasn't required a blood or platelet transfusion since her last round of chemotherapy. She had a few bouts of nausea and vomiting when she first came home, but they soon passed. We visited Santa this last week and it went well considering Paige's age. There was no hesitation when she approached to sit on his lap. She told him she wanted candy and toys for Christmas.
Yesterday we received a call from one of Paige's oncologist to say there had been a change of plan for her next chemotherapy round. She was supposed to be admitted on Monday (December 1st), but they have decided to wait until the CT scan (head, abdomen, chest and pelvis) is done on December 8th and the MIBG is done on December 15, 16 & 17th. Both tests will be done in Ann Arbor. If Paige were to receive chemo on December 1st then her blood counts (immunity) would be at the lowest point around test time. Since Paige requires general anesthesia as sedation for the tests, which includes intubation (insertion of a breathing tube), she would be at very high risk for infection (pneumonia). They plan to admit her on the December 18th or 19th to begin her next round of chemotherapy. If the test results show no progression (spreading) of the disease they will keep her on the same protocol of cytoxan and topotecan. If the tests are worse they will decide at that time what to do.
I'm sure most of you can tell by the pictures that Paige is really into Disney characters right now, especially Mickey and Minnie Mouse. We had mentioned to Mary, a wonderful and caring nurse at the chemo clinic, that we would like to take Paige to Disney after she has her surgery and stem cell transplant. She felt that we need to take her before these major events since she's feeling so good. There will also be many restrictions, including traveling, for months after the stem cell transplant. We asked Mary to talk to Paige's oncologist to see when would be a good time to go. Soon after we found out that Mary and Dr. Inoue had applied for a trip to Disney through the Grant a Wish Foundation. They have generously offered us a 7 day cost-free-trip to DisneyWorld in Florida. Our biggest concern was not having access to medical care, or at least physicans familiar with Paige. We were relieved to find out that we'll be staying at Give Kids The World Resort. It's a special resort near Disney that is especially for kids that are facing a serious illness. Actually, they say it's for kids that are terminally ill, but we refuse to say this will be Paige's only trip to Disney. At first I was hesitant to go on a "Wish" trip. I felt we were giving in to this disease. But, after talking to other parents in the same situation they said that is a normal feeling for parents. I quickly realized that I was being selfish and that this will be trip of a lifetime for us. The plan is to go in early January. The exact date is unknown since it will depend on Paige's bloodwork when we can leave. We're guessing about 2 1/2 weeks after the December chemo treatment. Apparently they can plan the trip within 24 hours. I've linked two websites of kids describing their Disney trip at GKTW. It sounds amazing!
Have a Great Weekend!
Love, Andy, Sandi & Paige
Give Kids The World http://www.gktw.org The site can take a few minutes to load. You can go directly to tour the resort at www.gktw.org/docs/villageTourIndex
Links to other kids websites that have experienced KGTW
Jessica's site at http://www.members.core.com/~jessicar/disney/disngktw.htm
Ashley's site at http://www.orear.com/ashley/story/disney/gktw.html