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Update on Alex's Fight Against Leukemia

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Wednesday, January 15, 2003

Hi Everyone,

Sorry for the long delay between updates. Just remember no news is good news when it comes to us. If something bad happens I will always post it quickly to this site. When things are going well I sometimes wait a few days before posting, to avoid jinxing it! Anyway things have definitely improved a lot since last Thursday.

Good News Item #1:

Alex was released from the hospital on her birthday (last Friday) and has remained afebrile (w/o fever) since. We're not 100% sure that the Synergist caused her fever on Thursday night, but it's the most likely suspect. Alex and I spent the first half of her birthday on Friday in the hospital. For most kids this would be depressing, but not for Alex. Between the music lessons (from one of the volunteers), the presents (from the hospital) and all of the other activities, she was actually sad when we were released! After we were released we visited Andrea in the hospital and then went home and crashed.

Crocodile Riders!We did have a special birthday surprise in store for Alex on the weekend after her birthday. Our friend Janet Arsenault read my post a few updates back about not being able to take Alex to the movies when she's neutropenic. Janet went ahead and contacted Regal Cinemas and they did an incredible thing for us. First they sent a care package on Saturday with a special copy of the Wild Thornberry's (one of the movies Alex wanted to see), Wild Thornberry's memorabilia and lots of other toys, games and CDs. Then they arranged for Alex to have a private showing of Treasure Planet (very cool movie by the way) at the Gig Harbor Regal Cinema. Alex's friend Alexandra and her Dad joined us and we had a great time. In addition to the movie (and refreshments), the folks at Regal had a huge collection of toys, games and CDs waiting for Alex at the theater. As you can see, Alex's favorite new toy was the six foot long inflatable crocodile named George! After the movie we headed home to a great birthday cake that Andrea's Mom had made for Alex.

I would like to thank everyone at Regal Cinemas (Zach Sheets, Missy Campbell, Kacee, Jonathan, Greg Dunn, Neal Pinsker, Ken Foreman, Michael Campbell, Chris Taylor and Mark Reis) for their compassion and generosity. All of you went above and beyond the call of duty to make this a very special birthday for Alex. I'd also like to thank Paramount Film Company for providing the special copy of the Wild Thornberry's movie on videotape. And lastly a special thanks to Janet Arsenault, without whom none of this would have happened.

Good News Item #2:

Andrea & NicholasAndrea was released from the hospital on Monday, only six days after she came very close to dying. Seriously for a few hours on January 7th the doctors were convinced Andrea wasn't going to make it through the night. None of the antibiotics were working and she was very close to going septic. At one point her blood pressure was 170/20 and she had a 106.7 degree fever. If things hadn't turned around I don't know what I would have done without her. Going through four years of hell with Andrea by my side was hard. Going through six weeks of hell without her around was much, much worse. There were times when I was so tired that I couldn't even remember my phone number or what day it was, but somehow we made it through all of this. Now all we have to deal with is a second transplant for Alex and Nick's continued development. Piece of cake in comparison, eh?

Overall Andrea is doing great, although she wants to know the license plate # of that truck that hit her! Her memory of the past couple of weeks is also very sketchy, due to the high fevers and the drugs that she was on. In a way it's probably a good thing that she doesn't remember everything. I kind of wish I could forget some of the stuff that we went through over the past couple of weeks.

Good News Item #3:

He's getting bigger every day!And now some good news about Nicholas. About ten days ago I was told that Nicholas was going to be extubated (taken off the respirator) in four days. For one reason or another it kept getting pushed back, until today when he was finally extubated! Actually Nick extubated himself by hocking up the respirator tube! I guess he just got tired of waiting for the doctors to do it for him. He is still receiving oxygen via a CPAP mask, but he is now breathing on his own 100%! In addition to being off the respirator, he is also quickly gaining weight. When they weighed him last Saturday he was 2 pounds, 12 ounces, a gain of 1 pound 3 ounces since his birth. They were supposed to weigh him again today, but with all of the excitement generated by the extubation, they decided to hold off a day. If he's continued to gain weight at the same pace, he should be over 3 pounds when they weigh him tomorrow!

Me and my Dad asleep at lastAndrea got to hold Nick for the first time in almost two weeks yesterday and she was in heaven. While she was under the weather I became the surrogate Kangaroo care Mommy for 2 1/2 hours every third day. I'm now very worried that Nick is going to grow up to like hairy chested women! I have to say that doing Kangaroo care with Nick was both the happiest and saddest of times. Happiest because I got to hold my son. Saddest because I had to return him to the Isolette after only 2 1/2 hours. The first couple of times that they took him back to the Isolette he threw a major fit, which made me feel even worse. The last time I did Kangaroo care, he was so relaxed that he didn't even wake up when they moved him back to the Isolette. As you can see from this picture (taken by one of his nurses), I was pretty relaxed too!

This week's list of people to thank is overwhelming, but here goes:

  • Andrea's Aunt Joan, Aunt Margaret and Uncle Alex for their incredible generosity and caring. Hopefully we'll all be together in Scotland someday soon!
  • The cast and crew of Beauty & the Beast for their incredible Christmas gifts to Alex. Special thanks to Danyelle Bossardet for getting everyone at B&B involved in making this a great Christmas for Alex.
  • My cousin Heidi and her family for their offer to fly out to help and for their care packages.
  • My cousin Kathleen and her family for their gifts to Alex and Nick.
  • My Aunt Joan and Aunt Doris for their gifts to Alex and Nick
  • Both of our parents for all of their support and love over the past four years. We would be lost without all four of you. Special thanks to Andrea's Mom for saving Andrea's life!
  • My brother Jimmy, his wife Kris and my niece Rachel for their gifts to Alex and Nick.
  • Tim & Debbie Lords for their support, medical expertise and generosity over the past six months.
  • Dan, Nancy & Krissy Flynn for always being there when we need a sitter for Alex and for their incredible generosity and support.
  • Amy, Bob & Kevin Wright for their care package and support. Amy and Bob's daughter Delaney lost her fight against AML on January 7, 2002. I never met Delaney, but I can tell from her photos that she had the same spirit that I see in Alex every day.
  • Wendy Taunton for arranging for the delivery of meals to our house. Special thanks to Wendy from Andrea, since you saved her from weeks of my culinary specialties: chili mac, mac & cheese and chili spaghetti!
  • Linda, Tim, Jeremy and Matthew Squires for their support over the past four years and for the copy of the Music Man.
  • Connie and Tim McGee for the care package and support.

...and finally I'd like thank the hundreds of other people who have helped us to weather the storms of the past four years and especially the past six weeks. I wish I could thank each of you personally for everything you've done for us, but as you already know my schedule is a little tight these days.

Unless something important happens, this will probably be the last update until next week. I've worked a grand total of about 20 hours over the past four weeks and while I'm lucky enough to have very patient and supportive clients, it's time to get back to work. I can't take it easy all of the time!

Thanks again for four years of love, prayers and support. Take care.

-- Todd

Donations for Alex

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


via PayPal

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