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Can we both feel better at 5 years? How do you manage the unknown?
@A MyLeukemiaTeam Member - MRD is Minimal Residual Disease a.k.a left over cancer cells. You will be considered remission if your blast is less than 0.5% but they say this is still alot of left over cancer cells so they will test your bone marrow at the same with the flow cytometry and if you get 0.01% your MRD is negative. Some patients they are in remission but have a positive MRD which means their chance of relapsing is pretty high. My daughter completed her 5 rounds of chemo last November 2022. She's been doing pretty good and started playing soccer in February 2023. I do know Jesus has cured my daughter's AML but sometimes I still worry. Praying our girls will continue to live a healthy life going forward!
@A MyLeukemiaTeam Member my daughter is remission since 11/2021. She did 5 rounds of chemo, but no transplant. I admit I don’t know what MRD means, I know everyone’s case is different due to genetics, but I also could have missed something as my adult child led her own treatment. She doesn’t take any vitamins or supplements but she is a model for healthy eating: she’s in college and her weekly shopping menu puts me to shame. Lots of salmon and vegetables. There’s only so much we can control ….she wants to control the bits she can, like her diet, knowing it may or not matter.
And would be sending you hugs in this app if I knew how! Hang in there! Positive thoughts!
Hi There - can you share how long your daughter has been in remission? is she got an MRD negative in the first cycle of treatment? Is there a transplant involve? My 14 years old daughter has been in remission for 9 months now. Is there a vitamins or supplement that your daughter is currently taking. I only have one kid and worry all the time about relapse. Any information would be great!
Everyday is the unknown if you have a diagnosis or not
I just try to live each day the best I can. I really try not to spend a lot of time thinking I am sick. I can’t change it so I do the best I can to stay as healthy as I can, eat a WFPB a diet, try to exercise if not fatigued , enjoy my family and my home and count my blessings.
I think about my illness when I have blood work coming up or a doctor appointment. Otherwise I live my life like I did before.
As a mother , I know worry is always there for our children. My daughter is 35 and just had a fall while running. Caught her toe on uneven pavement and took a tumble. Diagnosed with a fractured elbow. Yup, I worry and check on her daily. She lives 5 hours away.
So I guess I’d say personal
worry is easier than worry about our children. Do your best to be upbeat and help your daughter have a positive attitude. It really helps. Suggest she continue living her life to the best of her ability depending on how she is feeling each and everyday. If she seems down tell her to join a support group or get individual counseling for support. All of these things can help her cope with her situation.
Wishing you and your daughter many happy years. Hopefully her treatment will help her feel more positive about her diagnosis. Also, be sure to have her ask her doctors anything she wants to know. They are their to treat and support I always believe in having conversations with my doctors that are about the health issues and personal so I know them and they know me. I am not a number I am a person who needs to live many happy years. So far so good. That has been working for me.
Live each day one at a time, but put Dr appointments on the calendar. They and the nurses are our only hope.
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