Tuesday March 26, 2002
Sorry for the long delay in updates. Can't believe it's been two and a half weeks since I last updated this site. The good news is that Alex continues to be in remission! She had her weekly blood test last Friday and the results were fantastic. She even had an ANC of over 1800, which means her immune system is back to normal for the first time in 2 1/2 months!
To give Alex a chance to recover a little more, we postponed the IL-2 treatments until April 4th. On that day she'll be admitted to the hospital, have her PIC line reinserted and start four days (24x7) of high dose IL-2 treatments. Once the treatments are complete she'll be released and be given four days off IL-2. After that she'll start 10 days (24x7) of low dose IL-2 at home. It won't be a lot of fun keeping her hooked up 24x7 for 10 days, but it beats the alternative. Thankfully the pump is small enough that Alex will be able to carry it around in a small backpack.
Flip for Alex was held this past Saturday and was an incredible success. So far it has raised over
$2600 for medical, insurance and miscellaneous expenses. We once again want to thank Dawn and Marilyn at Rising Stars Gymnastics and everyone else who helped out, or donated to, Flip for Alex. We can never repay all of you for all you've done for the three of us. The best part of the day was watching Alex play for almost four straight hours with all of the kids who showed up. It was the first time in 2 1/2 months she had played with anyone other than her best friend Sophie and she had a
blast. It was a little nerve-wracking for the two of us, as she can't afford to get sick right now, but at least she has an immune system!
The fundraiser has helped us get through yet another slowdown of business and our inability to get this house sold! We lowered the price to $450,000 and had an open house this Sunday, and not one person showed up. In the county south of ours (King) home sales have remained stable over the past year. In Snohomish county, where we live, home sales are down almost 20% and houses in our price range are selling even slower. If we lower the price any further we won't have enough money to buy a new house, so we're going to hold out as long as we can. It would be really hard to find a rental house with two dogs and a cat!
Thanks to all of you who wrote me with information on COBRA. It looks like our options are limited, but the good news is that United Health Care will pay up to $10,000 in lodging and transportation if Alex goes to transplant. I'm still trying to get a handle on the deductibles (there are 3 or 4 of them) and the 90% coverage, but we'll work it out somehow. I'm looking forward to the day when I don't have to contact hospital billing departments. Today I spent about 3 hours on the phone with the billing departments at Duke, UW, Children's Hospital, Children's Medical Group and of course United Health Care. I've had more fun at the dentist! <grin>
A few people have asked me for a timeline of Alex's fight against Leukemia. It's pretty scary to look at, but here is the abbreviated version:
- Born: 1/10/98
- Diagnosed with AML: 11/10/98
- 1st Remission: 12/98
- 1st Relapse: 9/30/99
- Cord Blood Transplant: 10/20/99
- 2nd Remission: 10/1999
- 2nd Relapse: 6/1/00
- Mylotarg Treatments: 6/2000
- 3rd Remission: 7/2000
- 3rd Relapse: 9/10/01 in CNS and Leukemic Tumor
- 4th Remission: 10/2001
- 4th Relapse: 1/23/02 w/ 70% blasts in Bone Marrow
- Mylotarg Treatments: 1/27/02 & 2/11/02
- 5th Remission: 3/1/02
- IL-2 Treatments: Starting 4/4/02
Three years, 4 months and 16 days later, and we're still fighting this thing. It can be overwhelming at times, but at least we're still in the fight. Just hearing Alex say "Daddy wake up it's morning" at the crack of dawn each day makes it all worthwhile. Just wish she was a late sleeper like me! <grin>
Well I'm going to wrap this up and get some sleep, as Alex will be up in less than
six hours! Thanks again to all of you for 3 1/2 years of love, support and prayers.
Todd, Andrea and Alex
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258