Saturday March 9, 2002
On Wednesday we got additional results from last week's bone marrow aspirate and Alex is once again back to 100% donor marrow! She is in full remission! After endless research and
soul-searching we've come up with the following treatment plan:
1) In a few weeks Alex will begin Interleukin-2 (IL-2) treatments at Childrens Seattle. IL-2 is a naturally occurring substance made by cells in your immune system. Its primary function is to signal cells of the immune system (most commonly CD4+ cells, called "CD4 positive" cells) to become active and reproduce. A man-made version of IL-2 (aldesleukin, Proleukin) has been studied for over a decade as a way to increase the number of CD4+ cells. By strengthening Alex's immune system we hope to extend her current remission and if possible finally achieve a permanent remission.
Alex will have four days of IL-2 treatments in-patient at Childrens Seattle. She'll then have another 7 days of IL-2 maintenance treatments at home. She will need to have a PIC line reinserted in her arm before we can begin the IL-2 treatments.
Ironically we just had her PIC line removed on Wednesday because we didn't think it would be needed for awhile.
2) Every month Alex will have a bone marrow aspirate to determine if she is still in remission. A bone marrow aspirate can usually determine if a relapse is about to occur 90-120 days prior to the actual relapse, so hopefully we can stay ahead of any future relapse.
3) If Alex shows signs of relapsing in the near future we'll go straight to a second transplant. At that point there really won't be any other options.
4) If Alex shows signs of relapsing in the near future, but we don't catch it before the relapse has begun, we can try Mylotarg a third time to induce a remission before going to transplant. Another option is a new treatment that uses Diphtheria Toxin (DT) to induce remission in AML patients.
Diphtheria Toxin trials
are in Phase 1/2 at Wake Forest University. We sent off a blood sample to Dr. Arthur Frankel at Wake Forest today to determine if Alex is a candidate for the trial. They've found that patients who do not have Diphtheria antibodies in their blood react best to this treatment. Unfortunately most people receive five Diphtheria vaccinations by the time they are 4 to 6 years old and will test positive for Diphtheria antibodies. Alex will probably test positive also, but we felt it was worth the $3.90 to priority mail a blood sample to Wake Forest for testing. <grin>
5) If Alex achieves a long-term remission and then relapses, we'll once again look for alternatives to transplant. We'll be closely following the
MS-275 trials which are currently in Phase 1 (adults only) at the University of Maryland. MS-275 has the potential to allow leukemia cells to mature appropriately. By increasing the development of normal, healthy cells, it may be able to stop the proliferation of cancerous leukemia cells. If it does work MS-275 may be able to turn acute leukemia into a chronic disease. In concept it appears to be similar to Gleevec which is used in the treatment of CML (Chronic
6) And of course the best scenario would be that Alex achieves a permanent remission!
All of the doctors we've consulted with believe this is a reasonable course of treatment. We want to thank Dr. K at Duke (Dr. Joanne Kurtzberg), Dr Bubbles at Childrens Oakland (Dr. Carla Golden who always blew bubbles for Alex) and Dr. Doug Hawkins at Childrens Seattle for their help and support in putting together this treatment plan. We really appreciate all you've done for us over the past 3 1/2 years.
Well that concludes the medical report for this update. On the personal side we've been home for almost two weeks and Alex is doing fantastic. She went to
Gymnastics class twice this week and we've seen a dramatic improvement in her strength and endurance. We want to thank Dawn, Marilyn and everyone at Rising Stars
Gymnastics for all of their efforts. In addition to the private Gymnastics classes, Rising Stars is holding a fundraiser for Alex on March 23rd. We also want to thank the students at Marysville High School (led by Jared Keller and Jordan Taitingfong) who are putting on a talent show on March 29th to help raise money for Alex's expenses.
A saving accounts in Alex's name has been opened at Frontier Bank to raise money for her treatment,
expenses, 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
Alex had a great time yesterday as we had a couple inches of snow and for once she wasn't sick or in the hospital! She played outside for a couple hours and got to spend some time with her friends Sophie and Gabe. We're still being somewhat cautious as her immune system isn't quite back to normal yet, but isolating her completely wouldn't be fair. Being in isolation is hard on anybody, but for a child like Alex it's torture especially with boring parents like us. <grin>
Of course she woke up this morning vomiting with a 102 fever, so she must have picked up a flu bug from somewhere. Most likely it was at the hospital on Wednesday as it usually strikes about 2-3 days after exposure to the virus. Unfortunately the hospital is one of the worst places to be with a weakened immune system. Maybe the only place that's worse is a commercial airplane with its recycled air. Luckily she doesn't have a central line right now, so unless she starts spiking 106 degree fevers we should be able to stay home while she recovers. Hopefully the IL-2 treatments will help
kick start her immune system back to normal levels, so we won't have to worry about every little cold or virus.
Is anybody out there an expert on COBRA policy? We found out this week that our COBRA health insurance is not covering everything we thought it would. Until January 1st our Cobra coverage was through Aetna Insurance who paid 100% of in-patient expenses and provided up to $10,000 in transportation and lodging
reimbursement. On January 1st the staffing company (Administaff) that I received my benefits from, switched COBRA providers from Aetna to United Healthcare. United Healthcare only pays 90% of in-patient expenses (with a $5000 deductible) and provides no reimbursement for lodging and transportation. This could cost us up to $15,000/year more in expenses, especially if we need to relocate for treatment. I've asked Administaff to look into this as I thought we were guaranteed comparable coverage when they switched COBRA providers. If anyone has any knowledge of how COBRA works, please go ahead and email me.
Thanks again to all of you for 3 1/2 years of love, support and prayers.
Todd, Andrea and Alex
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