Wednesday September 6, 2000
I am so sorry that we haven't updated you since we have been home. Todd has been working non-stop and I have been unpacking and working in the garden non-stop.
Everything has been going great since we have been home. Alex is doing fantastic. She has more energy than she has ever had and her blood counts look great. She has loved being at home with her doggies and kitty cat as well as being in her own pretty room. The other day, I was out in the garden and she was inside with Todd. She brought her slippers into Todd and asked him to put them on her. After he put them on, she said, "I'll be right back" and walked out of the office. After a few minutes of not hearing her, Todd went looking for her. She wasn't in the house anywhere, so he came out the front door to find Alex half way down our street taking a walk! When she saw him she said,
"Hi Daddy!" What she couldn't understand is why Todd wasn't just as happy to see her! We now keep the door dead bolted at all times!!!! We love the new doctor that we are seeing at Children's Seattle and feel very comfortable with him. He has done a great job of keeping Dr. Kurtzberg up to date on everything that is going on with Alex.
Right now, we are trying to get arrangements together to go to Washington D.C. September 13 - 15. September is National Children's Cancer Awareness Month and The National Children's Cancer Foundation is putting together a summit and congressional hearings to talk about children's cancer issues. We really want to be there, but found out about it very late and we're scrambling to put together flight arrangements and hotel accommodations. Unless Corporate Angel Network comes up with flights for us, we probably won't be able to go since the cheapest airfare we were able to find was $1600 per person! OUCH!!! We also got a call from Kathleen, who is the research nurse on the Mylotarg trial today. There is a company that is making a cancer support and information video that will be distributed to patients and their families and they want us to be in it. We aren't sure if the timing is going to work or not, we'll let you know. I know
a lot of you are still wondering about People Magazine. We are told that it is still going to run, we just don't know when. I have a feeling that it will be this winter. That's when they took all the pictures last year, so in order to make it look like a current article that's what they would have to do. We'll let you know as soon as we hear anything about it. Alex and I are going to try to get down to Orange County after we get back from DC. Todd is going to be in Toronto for a few days and we thought it would be a good opportunity to come and see everyone. We will be there sometime after the 17th of September for about a week. We will also be trying to go down to the Bay Area around the 8th of October for a few days. In the middle of October, we have to go back to North Carolina for Alex's 1 year post transplant check up. After this, she might be able to have her central line removed. We're looking forward to that!
Thank you again for your unending support and prayers. We still need them everyday! We hope to talk to you and see some of you very soon.
Andrea, Todd and Alex
Note From Todd: A couple
of days after Andrea wrote this Corporate Angel came through with a flight
for us, so we're going to Washington DC! We're flying from Seattle to New
York today, then a second flight to DC on Wednesday. We'll be there from
Wednesday to Saturday and it looks like we'll be speaking in front of a congressional
committee. Actually Andrea will be speaking, I'll be trying to keep Alex
from grabbing the Chairman's gavel! <grin> We'll post more in our next