3yo daughter with MDS (monosomy 7) – things moving fast and I’m overwhelmed
Hi everyone, I’m honestly not even sure how to start this.
My 3-year-old daughter was diagnosed with MDS (monosomy 7) ~2 weeks ago.
Her bone marrow isn’t really producing anymore. Her platelets keep dropping (last values around 18–26), hemoglobin only holds with transfusions, and reticulocytes are basically zero.
She’s already needing regular transfusions and now even HLA-matched platelets because of antibodies. We just got the bone marrow results back and she’s at around 16% blasts. Doctors say it’s not AML yet, but clearly high-risk. They also mentioned additional genetic abnormalities, still waiting for details.
Everything escalated really quickly. The plan now is one cycle of azacitidine + venetoclax and then go straight into transplant if possible, even without much break.
To be honest, I’m struggling a lot. Just 6 weeks ago we were a happy family and now we’re suddenly talking about chemo and transplant. I feel like everything is happening so fast and at the same time I’m scared it’s not fast enough. I guess I’m just trying to understand where we really are right now. How concerning is ~16% blasts in this situation? Has anyone gone through something similar with a child this young? Any experiences or thoughts would really mean a lot right now.
Thanks for reading.
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