Hello Karen, I just wanted to encourage you on this journey with you dad. First, its all about how your dad feels about it. But, I would like to encourage you in the Lord. Quality of life is often questioned at times like this because they want to know would you like to die peacefully or painfully. However, I first had to listen to my grandmother, she is 63 years old, and she initially had MDS, she too suffered multiple issues that caused her pain. She too had to wait for infections to pass in order to get the VIDAZA. With all of the delays, this resulted in her getting secondary AML. So many times, my grandma was weak, in pain, she cried some days, some days she was very confused, but Karen, through it all, she always said “God got me” she never gave in to the diagnosis, she always steadfast with God. Now, my grandmother is in the hospital on the ventilator and as her power of attorney, I am carrying out her will to fight, despite the fact that doctors hold concern for the quality of life. I know that God is able, even when my grandma got her diagnosis of AML, she said “I’m going to fight”. My grandma is also a breast cancer survivor of 20 plus years, even then, they had given up on her- so she knew the struggle that was ahead of her when she made the conscious decision to fight. Karen, I encourage you to do your research, look into studies that have been done, and know as much as you can. I have learned in this journey that doctors will tell you only what they think you don’t know. I have read some studies that tells us that high risk MDS should be treated with an urgent approach, so now that we are at AML, and she’s older, debilitated, etc. she’s been given a death sentence. If I could turn back the hands of time, I would’ve tried to get my grandma with another doctor that would’ve treated her MDS more urgently. The difference in AML and MDS is, they try to wait things out with MDS, with AML they can treat regardless of infection or not because the key is to get the white blood cells under control to attempt to reach a remission. However, in older patients, they don’t really like doing the standard treatment when it gets to that point. Talk with your dad, you guys pray and see what he wants. I am holding faithful to God, if she’s going to die from leukemia, she’s going to die trying to fight this trusting God totally. Things are not always how they look. Currently, they are treating my grandmother with low dose chemotherapy (Dectabine) and so far, the counts are going down day by day. I visit her everyday (sometimes with a day or 2 break) and pray over her, read scriptures to her, and speak positivity into her. I hope I’ve said something to help you figure this all out Karen. God be with you. -Whitley E.
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