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Update on Alex's Fight Against Leukemia

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Tuesday September 14, 2004

Hi Everyone,

Light the Night WalkOkay, I'm going to turn the tables and take a turn at harassing all of YOU!!!!!!! In my last update, I spoke about the Light the Night Walk for the Leukemia and Lymphoma Society. I'm sure that many of you thought you had plenty of time and would make a donation later. Well, later is now here. The walk is this Sunday and to date we have only had two donations totaling $150.00 - thank you to the Yokem's and the Marshburns!!!!! This may not seem too bad until you look at the fact that there are 522 people on Alex's mailing list! That's pretty sad people!!! Even if it's only $5, PLEASE make a  donation TODAY!!! I cannot stress enough to you how important this organization is to us and others in our situation. Without the type of research that they fund, Alex would not be here. I have never seen a more efficiently run organization. 76% of every dollar donated goes straight to funding research or helping families financially. To me, that's amazing. Please don't put it off any longer thinking you'll get to it later. Go to the website now, and make a donation. It's very quick and easy and will take less than 2 minutes. I KNOW you have 2 minutes! Also, if you live in the area please come join us for the walk! We have been asked to carry the survivors banner at the front of the walk and we need help with it! So, if you live in the area come join us! The walk starts at 6:00 pm at the Ruston Way Park in Tacoma and will end at around 9:00. If you need directions, email us and we'll get them to you.

We have had such a great summer! Our meeting with Dr. K was fantastic. She's thrilled with how well Alex is doing and how good she looks. We were introduced to some other doctors that were at the meeting and it was amazing to see their reaction when introduced to Alex. Now I know that she is not the norm and we are very aware of what a miracle it is that she is still alive, let alone alive and looking the way she does. But, to watch these doctors that deal with cancer patients and are experts in cord blood transplant stand in awe of my child just about brought both my mom and I to our knees. I forgot to get permission from the companies that flew us down there and back. But I will tell you that the company that flew us down are angels! I got a call from Linda at Corporate Angel on Monday morning at 10:30 and she told me that she would take one more look in the computer, but she didn't think that we would have any luck. Then at 11:30 she called back and said that she found a flight and that the pilot, Nancy, would be calling me to see how soon we could leave! Nancy called immediately and told me that they would be flying down from Everett to our airport (Tacoma-Narrows) to pick us up! By 2:30 we were in the air and on our way! Thank you Nancy and Lance, you're awesome!

Camp Side-by-Side was amazing! We had such a blast. Some of you may have seen the post in the guestbook from Alex's counselor, Shannon. Poor girl just didn't know who she was dealing with when she decided to yell out my name when the "Viking's" asked for some parent volunteers! I went up on stage and made a fool of myself doing the "chicken call", the "moose call" and another one that I have blocked out of my mind! (There is no photographic evidence of this event, so sorry!) Shannon spent the rest of camp being called up each night to have eggs dropped on her head by Alex and eating a sundae that Alex made for her - with her feet! Now the sundae might not seem too bad unless you had spent the day with Alex and knew where her feet had been! You see, Wednesday was carnival day at camp and they brought in the huge blow up carnival "rides". One such ride was the huge slide. For some reason, it seems that this slide had been left out and gathered some grass in the seams and creases. Then add to that the rain that we had all week and the fermentation that was now taking place... This thing reeked! Shannon and I knew this first hand because we couldn't help but to "test out" the slide together before Alex went down. After going down 4 or 5 times, we tried to get Alex to go down and she would have nothing to do with it. Then, Andrew (aka Captain Sammy Sunshine) told her that he would take her down. Then of course she went down!!!! She spent the next 2 hours going down that slide! When it was time to go, I went to put Alex's shoes back on and her socks were a wet fermented mess, so I took them off and put her tennis shoes on without socks. It wasn't until about 5 hours later of basting in those shoes that the sundae was made!!!!!!! Shannon will never dare to even whisper my name in the future! Love you Shan Shan!!!!

Alex started school on Sept 2nd and seems to finally be getting the hang of it. We had to get it through to her that school is not camp and the activities are not optional! From day 2 she started coming up with excuses as to why she couldn't go. This morning she finally told me that she was excited and ready to go. We love her teacher, Mrs. Ekberg and I'm having fun catching up on all kinds of projects with all the extra time! She goes to school at 9:00 am and gets out at 3:30 pm. Nick still takes at least one nap a day, but usually two! I have been catching myself wandering around the house trying to find things to keep busy!

Her counts have been great and she finally started getting her immunizations. In fact, she's doing well enough that for the first time since she was diagnosed, we are going 2 months until our next appointment! That's HUGE!!!!

Nick is doing great. He's still a maniac and amazes us every day. One thing that we could do without is his love of his voice! His fondest hobby at the moment is to yell, scream or shriek at the top of his lungs. He's not mad or upset, he just wants to yell. For the most part, he's really well behaved and if he's doing something that he's not supposed to and simple "no" or "not to touch" works and he's off to something else. With yelling on the other hand, nothing works! We have told him no, we have told him quiet, we have ignored him, we have isolated him - nothing! HELP!!!!! Alex never did this and we have no idea how to make it stop, but it really needs to stop!

Well, I'm going to cut this short as I don't want to take up your 2 minutes that you are going to use RIGHT NOW to go to Alex's Light the Night page and make a donation! Enjoy all the pictures! We'll talk to you soon.

Take Care,

Andrea, Todd, Alex and Nick

More Photos...

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Featured Book
Sadako and the Thousand Paper Cranes
Sadako and the Thousand Paper Cranes
by Eleanor Coerr

Based on a true story, a young girl faces the battle of her life when she is told that she has the atom bomb disease, leukemia, thus she turns to her native beliefs by making a thousand paper cranes so that the gods will grant her one wish to be well again.




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