Saturday March 2, 2002
Sorry for taking so long to update the site. As you can imagine we've been a little busy lately.
We ended up staying in the hospital until February 20th, at which time we signed Alex out AMA (against medical advice). The doctors at Children's Seattle were refusing to release Alex until she had an ANC (absolute neutrophil count) of at least 200 for two straight days. Your ANC is an indicator of the strength of your immune system and a normal ANC is between 1800 and 4000. Alex's ANC was only around 90 when we signed her out of the hospital, but she was doing well otherwise. We decided it was more important for her to be home, since we probably won't be spending much time there for the next four to six months. We're very glad we did as she didn't exceed the 200 mark until yesterday which means she would have been stuck in the hospital for another 9-10 days!
Only 8 days after she left the hospital, Alex started taking gymnastics classes again! Dawn Greene (her coach at Rising Stars
Gymnastics) offered to give Alex private lessons twice a week and we took her up on the offer immediately. Alex's muscles atrophied quite a bit during our one month stay in the hospital, so this is really a godsend. Between the
gymnastics classes and running around the house, Alex is getting stronger every day and has even gained 1.5 pounds since we've been home. Of course I gained five pounds while Alex was in the hospital due to stress eating and easy access to junk food via the snack cart!
Dawn and Marilyn at Rising Stars Gymnastics are also holding a fundraiser for Alex on March 23rd. In the past Rising Star has used their Gym-a-thon to raise money for new equipment, but this year it has been
re-christened Flip for Alex! If you would like to get involved you can reach Rising Stars Gymnastics at (360) 653-7827. Over the next few months we are going to be in serious financial difficulties, so we are very appreciative of Rising
Stars' efforts. I figured out a budget today and if we are unable to sell our house and have to relocate to Duke for a second transplant our expenses will be close to $10,000/month for 4-6 months. We have also set up a saving accounts in Alex's name at Frontier Bank to raise money for her treatment, relocation costs and health insurance. If you would like to make a donation to this account you can send it to:
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258
I also wanted to thank those people who sent gifts, donations and cards during our hospital stay. The gifts and cards really brightened our days and the donations helped us to offset the $1200 we spent on meals and gas during our month in-patient. Normally being in-patient wouldn't be that costly, but we couldn't use the floor refrigerator since Alex was RSV Positive and in isolation. That meant we couldn't store any food at the hospital, so we ended up eating a lot of takeout. Between that and the 80 mile roundtrip commute every day (in a car that gets 17 mpg) it was a very costly stay.
And now it's time for some really good news. Today we got the results of Wednesday's bone marrow aspirate and Alex is in remission for a fifth time! The Mylotarg worked again!!! She has zero leukemia blasts in her bone marrow and her counts are starting to return to normal. As always the doctors are amazed at how well she's responded to the
Mylotarg. To be honest most of the doctors didn't think there was much chance that the Mylotarg would work a second time. As far as we know Alex is the only
pediatric patient who has achieved remission twice with
Mylotarg. Once again Alex has beaten the odds.
To celebrate we took Alex out to dinner at her favorite restaurant Todo
Mexico and Luis (our buddy) and Alex (the owner) were nice enough to put
us in a room by ourselves so Alex wouldn't be exposed to any germs.
Of course the fact that she has achieved remission makes our next decision harder. The obvious next step is to have a second cord blood transplant
(CBT) at Duke in about a month, but even with a CBT there is little chance she will achieve a permanent remission. There is a 70% chance she will survive the transplant, but only a 25% chance that she will stay in remission past the one year mark. The second CBT will also be a lot harder on Alex as she will have to undergo full body radiation, something she didn't have during the first
CBT. In addition to the short term effects, full body radiation increases the risk of a secondary Cancer developing in the future. So even if she bucks the odds and achieves a permanent remission, we might have to deal with a secondary Cancer in a few years. Plus if she relapses post-transplant again we might not be able to give her Mylotarg as there will be an increased risk of VOD
(veno-occlusive disease) which in its severest form has a mortality rate of 98%.
As you can imagine Andrea and I (especially me) are having a hard time committing to a second transplant but our only other options are to:
1) Do nothing and hope that Alex achieves another long-term remission with
Mylotarg. On the plus side she'll have good quality of life while she's in remission. The downside is that no
pediatric patient other than Alex has achieved a remission of longer than 8 months with
2) Keep Alex on a maintenance dose of Mylotarg and hope that keeps her in remission. On the plus side she'll have a relatively good quality of life, although she'll frequently have a low or non-existent ANC. The downside is that there is only one known case of a patient being given a maintenance dose of Mylotarg over a long period of time. So far I've been unable to find out if the patient (who was treated in Canada) survived, but I'll be calling Princess Margaret Hospital in Toronto on Monday to see if they know anything about this case.
To be honest none of these options really offer much hope of a permanent remission. There is a new drug (MS-275) being developed at the University of Maryland which may do for AML what Gleevec has done for
CML. The researchers believe that MS-275 can be used on a long-term basis to lengthen remissions and in more resistant cases turn acute leukemia into a chronic disease. Unfortunately they have just begun phase 1 trials and are at least 18 months away from pediatric trials.
At this point Andrea is leaning towards a second transplant and I'm leaning towards flying Alex to Lourdes and I'm not even Catholic! (just kidding) Honestly I really don't know what to do right now. We've always fought Alex's leukemia as
aggressively as possible, but the thought of putting her through a second transplant is keeping me up nights. If I didn't know what was in store it would be a lot easier, but I remember all too well how hard the first transplant was on her and know how much worse the second transplant will be. I never thought we'd still be making these decisions three and a half years after she was first diagnosed with AML.
Thanks again to all of you for
over three years of love,
support and prayers.
Todd, Andrea and Alex
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