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Update on Alex's Fight Against Leukemia

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Quick Update: Friday, September 20, 2002

Alex is FLT-3 POSITIVE! Those of you who have been following the updates probably know that we had Alex tested for a new drug called a FLT-3 inhibitor a few weeks back and the preliminary test results came back negative. We were pretty crushed, but unbeknownst to us the pathologist at Children's Seattle kept testing the sample. Earlier this week we were told that Alex was probably FLT-3 positive and today it was confirmed. This means she is now a candidate for the FLT-3 inhibitor trials!

Not only does she have the FLT-3 gene mutation, she also has a deletion which is extremely rare. The presence of the deletion (along with some other factors) is why they questioned their initial findings in the first place. Now for the really amazing statistic. Alex was FLT-3 negative at diagnosis back in November 1998. Only 10% of AML patients become FLT-3 positive upon relapsing. Of course Andrea says that she's relapsed five times, so that should give her a 50% chance right! <grin>

Johns Hopkins has already told us they would consider granting Alex a compassionate exemption, even though the drug is currently not open to pediatric patients. Of course I do still need to convince them to give her the drug while she's in remission. Normally the drug would be given after a relapse, but we can't afford a 6th relapse. Hopefully they will understand our situation.

We're also working on getting Alex access to the IT Busulfan study at Children's Seattle, which also normally requires a relapse. I've got a lot of convincing to do over the next few days! <grin>

Thanks again to all of you for almost 4 years years of love, support and prayers. 

Love,

Todd, Andrea and Alex


Sunday, September 15, 2002

Hi Everyone,

Alex's New Teddy Bear!Alex continues to recover from the Mylotarg treatments. Her ANC (immune system count) finally went over 500 last Monday and then over 1000 on Friday, which means we can finally go out in public again! You can't imagine how good that feels.

Of course we immediately took advantage of the return of her immune system. Andrea took Alex to the Point Defiance Zoo in Tacoma with some friends on Wednesday. As you can see from these photos she had a great time there, especially with the Polar Bear (who placed his paw up to her hand) and the Larakeets (who thought her head was a tree!). I've posted three photos of Alex and the Larakeets at the bottom of this page.

On the Beach in Port TownsendYesterday we took a day trip up to Port Townsend at the very tip of the Olympic Peninsula. We walked around town, ate lunch at a 50's diner then headed to the beach. Going to the beach in Washington state is a little different than other places. The temperature was in the high 50's and with the wind chill it felt a lot colder than that. Still it was great to see her running around the beach, picking up shells and coming very close to falling into the water. It's amazing how much energy she has these days, only five weeks after finishing Mylotarg treatments. She's been running the two of us ragged over the past few weeks. We really wish we could enroll her back in preschool, but right now the risk is too great.

Hanging out in Port TownsendOur insurance company (Premera Blue Cross) has still not approved a second transplant, so we haven't made a final decision on Alex's next treatment. We have found a few new treatment options in the past few weeks, including: IT Busulfan to prevent another CNS (Central Nervous System) relapse and a Mylotarg/Conventional chemo treatment being trialed in Europe. In addition I'll be contacting Texas Childrens (AML Vaccine Trial) and the University of Maryland (MS275 trial) to see how their trials are progressing. We're hoping that one of these two treatments may be the true cure that we've been looking for.

In other news we're planning a short vacation to Las Vegas in November. I should say we're planning a short vacation as long as Alex stays in remission. We haven't had a vacation in over a year and there's no guarantee we'll be able to take another vacation in the near future, especially if Alex goes to transplant. The current plan is for me to fly down to Las Vegas for Comdex 2002, while Andrea and Alex fly down to Orange County to visit Andrea's parents. Then Andrea, Alex and Andrea's parents will drive over to Las Vegas a few days later. We're planning to stay at Treasure Island, since we thought Alex would love it. I haven't been to Las Vegas since I was 5 years olds (32 years ago!) and I've heard it's changed a little. <grin>

I've finally made enough of a profit with the Alex's Coupons site to make a 10% donation to Corporate Angel Network. Going to be sending a $50 check to them as soon as this month's affiliate check arrives. So far the site has generated $1500 in the past 11 months, while I've spent $1000 to keep it going over the same period of time. I've put a lot of time and money into the site and I'm hopeful I can keep it going, since I feel it serves an important function by raising awareness and money. I recently added two new categories to the Alex's Coupons site: Freebies and Printable Coupons. Most of the deals in these two categories don't cost a cent, but do help us generate income for Alex's Coupons. Please let people know about Alex's Coupons and also Alex's Place. The more people that know about Alex's fight, the better.

We would also like to ask you to pray for Tommy Burnette, one of Alex's transplant buddies. Tommy has had three transplants over the past three years and has undergone continuous treatment during that time. Tommy is currently in critical condition at Duke University Medical Center with multiple problems including liver failure. Without a miracle he won't make it. His parents, Linette and Tom, have really been through a lot over the past three years and need all the prayers and support they can get.

Lastly I received a number of requests for an Alex's Place Guestbook, so I went ahead and created one here using the Alex's Coupons forum software. I've set up the Guestbook so anyone can post to it.

Thanks again to all of you for almost 4 years years of love, support and prayers. 

Love,

Todd, Andrea and Alex

P.S. Special thanks to everyone (including the Coldstone Crew!) who has sent Alex cards and gifts over the past few weeks. More special thanks to Erik Mathy (my old TNT coach) for his help.

A New Friend!He Flew Away!And he's back again!

Donations for Alex


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

OR


via PayPal




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