Thank you so much for your perseverance in prayer for Ava and the Lee family. The waiting has seemed like ages.
Praise God, Ava got approval for the compassionate use of Mylotarg (!), which would take place in Seattle. Thank you so much for your intercession. Even so, she may not start Mylotarg at this time. After speaking with the oncologist today, there are two options to consider. Both follow the same 3 steps: chemo --> skin radiation --> transplant.
Option 1) Mylotarg + fludarabine + Ara-C (in Seattle)
This would be an aggressive chemo regimen, a last-ditch attempt to get the cancer into remission, followed up with skin radiation in preparation for transplant. It is "possible" for all those steps to occur in sequence, but highly unlikely. Still, it's an option.
What comes along with this aggressive treament is immunosuppression, so this would require inpatient treatment. Ava would need to be hospitalized until her blood counts recover, which would mean about a month in the hospital, since it's about 30-40 days between doses. This would be very hard on Ava not only physically, but also emotionally and mentally to be hospitalized for a month while likely feeling really poorly. She would also need to fly out to Seattle as soon as possible to receive this treatment. If this treatment doesn't work, there's not much more that can be done. They can look into clinical trials to see if Ava qualifies for any, but it wouldn't be hopeful.
Option 2) Nelarabine (in Chicago)
Nelarabine is another chemo agent for consideration. Ava had it once before; it helped bring her MRD level down some more right before transplant. The good thing is that Ava would be able to get treated on an outpatient basis here in Chicago, and it would allow her a better quality of life. If the nelarabine works, then she would receive skin radiation in Chicago before flying to Seattle for transplant. If it doesn't or Ava only has a partial response, then she can still get the Mylotarg treatment.
Ava's cancer has demonstrated itself to be very aggressive, and the doctors said we are at the end of the line with treatment options. The likelihood of these options working is low and it will be difficult to get Ava to transplant. Still, they haven't quite said that it's time to throw in the towel, and they are willing to give it a try.
The Lees will likely opt for nelarabine treatment in Chicago. There don't seem to be many downsides to this, as it would not jeopardize Ava's opportunity to still receive Mylotarg later if necessary, and would afford her a better quality of life. Ava could start treatment as early as Saturday possibly, and would receive outpatient treatment for 5 days at a time.
Mike & Esther are so grateful for your continual prayers for Ava and their family, lifting up every area of the journey. Thank you so much for walking with them.
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