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Update on Alex's Fight Against Leukemia

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Thursday June 11, 2004


Leave it to EVIL Granny M to buy me TONS of plants for my birthday and then HARASS me for being in the garden!!!!! Just like a woman! Hehehe, love you mommy!

I am sorry for not getting to this sooner. It's so nice to hide in our little delusional world and pretend that everything has always been and will always be peachy! Then there is the other side of us that quite frankly is terrified to update telling you just how fabulous things have been going as it will surely cause all hell to break loose! Oh well, I am here to spit in the face of Murphy and his law and tell you... things are GREAT!!!!!! If anything bad happens after this is posted it will be the last time I will dare to report that to you!

Toothy SmileAlex has been doing great. She is 14 1/2 months out of transplant, one more month and she will match her longest remission! She looks fantastic and has an unbelievable amount of energy. Last weekend we began our summer tradition that we started last summer and took her to the drive-in to see Shrek II and we had a blast. Bear in mind that here, drive-in's can't start their movies until 10:00 pm at the earliest because that's when it's finally dark enough, so it didn't end until about 11:30 and she was upset that there wasn't a good movie playing for the second feature so we could stay longer! She is loving school and we are sure to see great protest on the last day. Academically she is right where she needs to be in some areas and above in others. Socially, she is way behind. This is the first time we have ever dealt with her being behind in this area because around adults and adult situations, she is very advanced and fits right in. Given that her experience with other children is very limited, she really has no clue what is appropriate. Frankly, she tends to scare other children! She is so excited to be around them and tends to run up get in their face and expect that they will be instant best friends and the other kids don't really know what to do with this. She also has no school experience. She was only in preschool for about 2 1/2 months when she was 3 before she had her 4th relapse and had to be pulled out. So to say that she is clueless in the classroom is a bit of an understatement. Given that, we have decided to have her stay in kindergarten next year. It was a decision that was both difficult and easy. Emotionally we thought of how she would feel not graduating from high school until she was 19 and if she would add it to the list of things that by then she's sure to resent us for. Then, the rational side comes in and kicks the emotional side in the butt and says who the heck cares! If she's alive to graduate, who cares if she's 18, 19 or 30! She's alive to graduate! We will hopefully be going to Duke after she gets out of school on the 23rd since we didn't get to go in April like we had planned. We are still waiting to hear from Corporate Angel as to whether or not there are flights available to get us there and back. If they aren't able to find us a flight we won't be able to go because we still can't fly commercially. Alex hasn't had any of her vaccinations redone and Nick has had killed vaccines, but hasn't been able to have any of the live vaccines because they have to have those at the same time. If either one of them were to get chicken pox or measles it would be a very bad thing, so we can't risk it. She will start horse camp on July 5th and she's very excited about that. We are also hoping to get her broviac out at the beginning of July so that maybe she can take swimming lessons and possibly even swim at Grandma and Popop's beach! (more on that last part in a bit) She has had this broviac for 23 months now, so it will be interesting to see what she does when it comes out. Some of you may remember the story from when she got her line out after the first transplant we asked her where her broviac was and she got very distraught, said that she just didn't know and then ran to the hotel room door and yelled "broviac, come back!"

He's Walking!Nick continues to amaze and astound with his unwillingness to do anything preemie! He is starting to walk, but much prefers taking 5 steps or so then laughing and throwing himself to the ground! He is such an amazing escape artist, that I think even Alcatraz would be no match! He's starting to talk a bit and just to make sure you're paying attention he'll throw in a "thank you" when you hand him something or say his name out of the blue and I'm not talking about saying Nick, he actually can get out Nicholas and have it be very clear. He still doesn't really have a baby fat roll on him to speak of, but of course in order to gain weight, he might actually have to sit still for more than 5 seconds! As of Wednesday, he was 20 lbs 7 oz and 30 3/4" tall. It has really been an adjustment for both Todd and I because we never had to chase Alex. Of course, it's pretty hard to run when you're hooked up to an IV pole! He is so different from her in so many ways that it often makes us feel like first time parents again! For the most part he and Alex get along famously. Although they do have their moments... A good example would be a few days ago when we were all up in the playroom and my parents realtor called to check in. Now I need to explain that Victoria has become a fast family friend and is my age. Her and her husband are, much to her mother's distress, still on the fence as to whether or not they will have children. All is going well and Victoria and I are having a lovely conversation when all of a sudden, Alex starts screaming bloody murder right behind me. I whip around ready to administer grave punishment for such behavior only to find Alex's hand in Nicholas' mouth with his teeth firmly in clenched in crocodile mode. Todd and I immediately jump in to separate the two and check the wound. Then, before I realize what's going on, Todd remembers his cousin Kathleen's method for dealing with biting and proceeds to bite Nick (very lightly of course)! Nick starts screaming - though probably more from Alex's screaming - and it's an absolute zoo! Meanwhile, I tell Victoria, that if her mother knew that I was allowing her to hear this she'd take out a contract on my life!!!! Ahhh chaos, what a wonderful thing!

Hangin' out in the hammockTodd's business is coming out of the annual beginning of the year slump very nicely. I always joke that it's all part of his evil plan... We're always dirt poor for my birthday and Mother's day and then when his birthday and Father's day roll around in June everything's just peachy! Just not fair! He has been doing an amazing job with Alex's coupons. He started paying close attention to one of my "addictions" (beading) and saw that many others had such an addiction, so he added a fabulous bead site to the page. The coupon site was also mentioned in June's issue of Organic Style magazine as a great site for organic coupons, so he has added many more organic sites to the page. So, if you haven't gone by lately go check it out. He really finds great coupons and it's a fantastic easy way to shop and save money. Sorry, that really ends up sounding like a commercial, but I really am proud of him and want everyone to see why! His ability to work while surrounded by chaos, constant interruptions and frequently being mistaken for a jungle gym will always impress and amaze me. I really am one of the luckiest women around. I not only get to stay at home, I also get to have my husband at home who is always willing take over for me at the drop of a hat. In fact, he has pretty much been watching Nick all morning so that I can write this update and get the EVIL Granny off my BACK!!!! Hehehe Love you mommy. Todd, you're awesome and I love you.

eBay Here I Come!As for me, I am adjusting to "normal" life pretty well, I think. I mean, I think it might be normal and I think I might be adjusting, but both are very questionable! As you have probably gathered from my DARLING mother's guestbook entry and my LOVING words to her at the beginning of the update, I have been spending much of my time in one of my favorite places, the garden. I have been hard at work in the front yard making it mine. We moved into this house two years ago next month and I have been dying to rip it all up, so for my birthday my mom and I went on a garden shopping spree and I have been in heaven since! I have also been knitting up a storm. Every time I knit something, people tell me that I need to be selling to boutiques. The problem is that when I knit a cute little outfit that looks like it would be sold in a boutique, it generally takes anywhere from 40 to 90 hours to complete so for me to go to a boutique that is going to expect to buy it for next to nothing would be insane. I have been watching several design groups on eBay that are made up of women that design and sew exquisite children's clothes and then sell them for amounts that actually make it worth their while. So, I have decided to start some eBay auctions, hold my breath, get over the enormous fear that not only will no one buy them, but won't even look at them and see what happens. I'll let you know when they are up so that you can come and see them. Please, please come see them!!! I'm okay, really.

So, about Grandma and Popop's beach... My parents finally found an amazing piece of property and closed escrow on it last week!!!!! They are going to build their retirement home up here in Gig Harbor!!!! Although as soon as my mom reads this update I'll probably find an ad in the paper for 3 acres of forested waterfront for sale - CHEAP!!! They have said that they are on the 5 year plan, but those of you who know my parents will realize that this would require an amount of patience that neither one of them possess. I'll see you tomorrow mom! Actually, all kidding aside, we couldn't be happier about them moving up and can't wait. We are looking forward to them spending quite a bit of time up here this summer once dad is out of school. In addition to my parents moving up, my sister Wendy and her husband Ray have decided that within the next 2 years they will be moving up! So like I said at the beginning of the update... life is GOOOOOODDDDD!!!!!!

Well, I think that about covers everything and then some! Thanks for checking in on us!

Take Care,

Andrea, Todd, Alex and Nick

More Photos...

Todd's Blog
Today's Subject: MTBE & the NIH Budget Cuts

Hi Everyone,

In the past I've been hesitant to politicize Alex Update for fear of offending anyone, but recent events have changed my mind. You may ask what events I'm referring to. They are the following...

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