Thursday, June 12, 2014

Reality Check

Thank you again for your continued prayers, messages and love. It's been a tough day.

Mike & Esther had a sobering talk with Ava's doctor today who reiterated the seriousness of Ava's condition. Of course they know it's serious, yet it's hard not have been lulled into a fake sense of "normalcy" because Ava seems to be doing so well on other levels, comparatively. The conversation was a sobering reminder that this leukemia battle is real and fierce. It isn't ideal that Ava reacted to the Erwinia, meaning she isn't getting the full chemotherapy regimen. While they could try desensitizing her to the drug, the risks seem to outweigh the benefits, as she may have an even worse anaphylaxis than before.

The doctor conveyed how important it is that Ava's next bone marrow biopsy show her to be "MRD negative" -- if she isn't, her all around prognosis goes down and this would be considered a failed treatment. The aim is not merely to get her numbers as low as possible, but to get her to MRD negative: remission. They are seeing that in ALL (vs. AML) patients, any presence of MRD significantly decreases the chance for successful BMT/recovery; Ava needs to be MRD negative for even a chance for successful BMT.

With that said, they are not leaning toward BMT for Ava at this point. Remember that BMT comes with its own set of risks and hurdles. If Ava is MRD negative, the plan is to stay the course and have her complete this two-year phase of chemotherapy. If she has residual disease, they'll likely switch her back to AML treatment which is the inpatient and more intense treatment.

To add to this, Mike went home earlier tonight to be with Gwen, as she had been struggling physically recently with cough/runny nose, progressing to all out crying from her stomach hurting. She eventually fell asleep late in the evening, but had some labored breathing so Mike brought her into the ER. Gwen has since been discharged with the thought that she was having an asthma attack, but Mike & Esther can't shake the nagging concern that Gwen's food allergies may be the source. It's been an exhausting couple days.

Please pray for:
1) Ava's complete healing; MRD negative (permanently!)
2) Gwen and her allergies - may God bring revelation and insight and healing to Gwen as well
3) Mike & Esther, for overall strength, perseverance and REST all at the same time.
4) Anything else you have on your heart to pray for.

Thank you.

p.s. I will likely get the meal train up again soon. I will let you know when I get an idea of helpful dates/frequency.


Anonymous said...

It was really a tough day... Thanks to Mike and Esther, for hanging in there. You are lighting the world with the most beautiful love while you are walking through your darkness. Mike & Esther, don't forget to take care of yourselves. You can keep calm and better support the kids only when you are OK. Keep praying for your family! Let's win this battle together!

Anonymous said...

Got it ! We stand united to fight and support you guys through this fiery trial !!, In faith and hope in our Lord Jesus!

Anonymous said...

continued prayers are said for Ava and your family.