Monday, May 2, 2016

Urgent prayer request

Ava's MRD results came in at an increase from .007% to .017%. She is also in pain from the chloromas in her body. She has needed oxycodone the last two nights to help with the pain. Otherwise, she is still in great spirits and good health and wakes up each morning with a smile and so desirous to play and live!

Currently, radiation and second transplant are no longer on the table. The primary focus will be to get her into a better place with her disease. The sad truth is, second transplants do not seem to help against extramedullary disease (chloromas).

Our doctor is in the process of appealing for the compassionate use of Mylotarg which is a more targeted chemotherapy. It is being used for AML and since Ava has a mixed diagnosis of AML and ALL it may be difficult to get approved. We will hopefully know by tomorrow. Please pray that the drug would be approved for Ava.

Research shows that Ava's diagnosis holds very poor prognosis especially now with the recent happenings. But we continue to petition before the Great Physician for her little body to overcome the seemingly insurmountable obstacles set before her. But, even more, we ask for prayer for our hearts, that we would lay them down and surrender it all to the one who holds all our tomorrows.

Still it is hard. And with tears upon tears we hope and pray for a future with our Ava Bright Lee.

At the Royal Ball throwing back water like a boss

Ava and Juju

Taking more naps throughout the day due to more fitful nights from chloroma pain

Worshipping with daddy

Auntie Sof and Uncle Mark = hours of fun

More resting 


Anonymous said...

Praying fervently for your family and for Ava to continue to be a walking miracle

Amy Lam said...

Praying for your family! And that the targeted drug will get approved. Lloyd says there are some targeted drugs out there that have shown a lot of promise for specific patients.