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Update on Alex's Fight Against Leukemia

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Friday, June 6, 2003 (Day 66 Post-Transplant)

Hi Everyone,

Alex's Own Iron Giant!I'm going to try to make this a quick update. We'll see how I do!

First, we want to thank everyone who has signed the new guest book. I guess everyone likes it a lot better! I have been rubbing it in to Todd a bit today since I never really liked the old format!

Things are going well. Alex is doing great and the doctors remain thrilled with her progress. They are continuing to wean her off the Solumedrol (steroids) and this has had a great effect on her glucose and blood pressure. She is completely off the insulin shots and we aren't even checking her sugar levels anymore! They have had to wean her off some of her blood pressure medicine because her blood pressure was getting too low. We might get lucky and come off those completely next week. We have been quite surprised that her appetite hasn't subsided with the steroid weans. She still eats non-stop from the time she gets up to the time she goes to bed. She seems to be having hard time with self esteem this time. She is very aware of her appearance this time and because she isn't happy with how she looks, she has not been as outgoing as she usually is. It's been hard for Todd and I to watch. Hopefully, her face will start to thin out and get back to normal soon with all the steroid weans.

Goofing off w/ Daddy!Nick is doing great too. He is getting more and more of a personality every day and it's a lot of fun. We haven't weighed him again since before the last update, so I can't give you any information there, but he looks huge!!!! He had his follow up hearing test last week and it went great. Both ears passed! Just before he was released from the hospital his right ear failed a hearing test. They told us that it could have been that there was too much noise in the room and he wasn't completely relaxed, or that he had fluid in the ear. Basically they weren't too concerned and neither were we, but it was still good to have him pass.

Out for Ice Cream w/ Maddie & MikieWe have a great ice cream place close to the apartment that is a walk up with outdoor seating. Alex loves to go because they have a wishing fountain. Last week when we went for the first time, I decided to see what Nick thought about ice cream... He wasn't too sure about the first bite and ended up losing some of it. Next he stuck his fist in his mouth as if to try to get every last bit back in. A few minutes after that, he started yelling at me for more!!! I gave him a little more and this time he didn't lose a drop!


We also have some sad news. Aristophanes passed away on May 30th. He was transplanted just before Alex and had been outpatient for a few weeks before being readmitted and put into PICU. His family is still here as his brother (Hermes) is also being treated. Unfortunately Hermes' first transplant did not engraft, so they are going to have to transplant him again. They are here from Greece, speak very little English and have no family here. Please keep them in your prayers. I can not imagine the anguish of not only losing a child, but then not being able to lay them to rest because you are still in the hospital fighting for your other child's life. Things can really suck here sometimes.

Babies Jordan and Noah are still in PICU trying to get better. They both have websites if you would like to know more about them. Their parents would love to know that you are keeping up with them and praying for them, so feel free to leave them a message in their guest book.

Juan is also still in PICU, but I don't have a website for him.

I will leave you with a little bit of "life with Alex"... Alex was eating corn and chicken the other day for lunch. She tends to have a hard time with corn, because she doesn't really like to swallow the skin. In the middle of eating lunch, she got up and disappeared into the bathroom. Since she was only in there for a few seconds, Todd and I looked at each other with suspicion. I asked her if she just spit her food out into the toilet. She hesitated for just a moment and told me no. I then asked her if she was lying to me and she said "Just a little"! I know we shouldn't have, but Todd and I were laughing too hard to scold her. Oh well, pick your battles right?!

Already Channel Surfing!I am going to wrap up this "short" update now, as Todd still has to upload it to Alex's page and add all the pictures. Plus, it's 1:15 am! I think that Todd was trying to make a point that he needs sleep... We went to dinner tonight at Outback Steakhouse (they have a patio) and since there was no parking close, he dropped Alex and I off so we could get a table. Next thing I know, Todd comes walking up to the table - ALONE!!!!! He forgot Nick in the car!!!! Please, whoever stole my husband's brain needs to return it to him!

Thanks again for all your posts in the guestbook. It's encouraging to see all of them. Take care and we'll talk to you soon!

-- Andrea, Todd, Alex & Nick Martini

 

Donations for Alex


We are in the process of raising money for the expenses we are incurring during Alex's 2nd Transplant At Duke. We have 3 ways in which you can make a donation:

Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258

OR


via PayPal using your checking account or PayPal Account (this account cannot accept credit cards)

OR


via PayPal using your credit card (this account can accept credit cards)




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