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Update on Alex's Fight Against Leukemia

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Quick Update: Monday, November 25, 2002

Hi Everyone,

Well we got out of the hospital last Thursday as scheduled, then had to return 18 hours later when Alex spiked a 104 degree fever. The results of the blood cultures aren't definitive yet, but she has a bacterial infection, most likely Strep A. Until Alex can go 48 hours without a fever (and be off one of her antibiotics) we'll need to stay in-patient, so we definitely won't be home for Thanksgiving and could be stuck here a lot longer. We just hope we'll be home for Christmas.

In addition to her fevers, Alex has been coughing (probably because of mucousitis), so we are in isolation to make sure she doesn't have RSV or Pneumonia. As long as she doesn't show any additional symptoms we should be released from isolation tomorrow. At least then she'll be able to ride her bike in the halls when she's feeling better.

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

-- Todd

P.S. Special thanks to everyone who has sent presents, cards and stickers to Alex over the past few weeks.

Quick Update: Monday, November 18, 2002

Hi Everyone,

Alex's counts almost completely bottomed out today. Her ANC (immune system) is down to 55 (normal range is 1500+) and her platelets are down to 18 (normal range is 180+). We'll be going back into the hospital tomorrow for the second round of chemotherapy and at that time she'll receive a platelet transfusion. As long as there are no complications we'll be able to take her home on Thursday, but the first fever above 101 will put us back in the hospital for at least a few weeks. Hopefully we'll be home for Thanksgiving.

Does anybody want to buy a 9 year old BMW with 180,000 miles? Last month the fuel pump died and cost us $1000. This month the water pump failed and cost us $750. Next month we'll have to replace the brakes, two tires and possibly the shocks. If this keeps up we're going to rebuild the car piece by piece and go broke in the process! When it rains it pours!

Not much else happened this weekend. Without an ANC we can't take Alex out in public, so we spent the weekend at home. Needless to say Alex was bouncing off the walls. Don't know how we're going to get through 4-6 months of isolating her from people.

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

-- Todd

Wednesday, November 13, 2002

Hi Everyone,

Riding Her Bike in the HospitalAlex's peripheral blast count went over 60% on Monday, leaving us with no other option but to start treatment on Tuesday. We weren't able to get access to any of the new drugs, so she started high dose ARA-C / Mylotarg treatments on Tuesday afternoon. So far she is feeling okay and responding well, but by tomorrow she'll probably start to feel the full effects of the chemo. Since this is conventional chemotherapy, she will lose her hair, as well as suffer all of the other side effects associated with these drugs. This was a very hard decision to make, but we had no other choice.

Alex's ARA-C treatments will continue until Thursday. Once they're done she'll receive a dose of Mylotarg, followed by a four day break from treatment. She'll then have two more days of ARA-C treatments starting on Monday or Tuesday of the following week. If she survives and gets into remission, we'll be going forward with a second cord blood transplant in January 2003.

Riding Her Bike in the HospitalI want to thank all of you for your efforts to help us. For those of you who managed to get in touch with your Senators or Representatives, please use this opportunity to tell them Alex's story. Let them know we were unable to get access to any of the FLT-3 inhibitors because of Alex's age. Let them know that pediatric patients are almost always the last to receive experimental drugs and often die because of this. Let them know that the lack of funding for a National Cord Blood Bank has led to private for-profit companies reselling donated cord blood to public cord blood banks. Let them know that the pediatric Cancer rate has increased 11% in the last 30 years, while the adult Cancer rate has gone down, and no one seems to know why. Let them know that spending on pediatric AIDs research still exceeds spending on pediatric Cancer research by a large margin, even though 50 times as many children die from pediatric Cancer than from pediatric AIDs. Let them know that 3000-5000 children with Cancer die in the United States each year. Let them know that we can't ignore the problem any more.

Thanks to everyone who has been sending cards, stickers, etc... to Alex. If you do want to send something to Alex you can send it to the house:

Ms. Alexandra Martini
2504 7th St NW
Gig Harbor, WA 98335

...and I'll bring it to the hospital. She's going to be in and out of the hospital over the next several weeks and I want to make sure her mail doesn't get lost in the hospital mail system. I also wanted to thank everyone who donated via PayPal. When we were preparing to go fly to Baltimore for the CEP-701 trials, I had to buy a non-refundable plane ticket for part of the journey, and your donations paid for that ticket.

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


Todd, Andrea and Alex

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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