r/pediatriccancer • u/crypticjanitor • 5d ago
malignant rhabdoid tumor (liver)
Hi all - very new to this page and space. Unfortunately our 5 month old daughter has just received a diagnosis of MRT in her liver. Unsure yet as to stage, but hoping for any positive stories from those who may have personal familiarity with this condition, particularly with presentation in the liver.
We know prognosis is poor and treatment is brutal - just hoping for any hope.
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u/spiffymallow 5d ago
I don't have much to offer in the way of advice or positive personal experience, but I just wanted to comment as my baby also has a rhabdoid tumor (though not in his liver). We just found out about a month ago, and it's been a insane month for us already as far as treatment is concerned. We have already undergone multiple procedures and he's started an aggressive chemo regimen that we'll mostly be inpatient for. I really do wish you the best. It's a horrible thing to have to go through.
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u/irottttt 3d ago
My daughter was diagnosed with a rhabdoid tumor in her liver at 10 months in 2022. Unfortunately my sweet girl was already stage 4 when she was diagnosed, but if you have any questions or want to reach out, feel free. I'm so sorry your family and sweet baby are going through this!
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u/smhoops 5d ago
My daughter was diagnosed with metastatic MRT at birth. Not in her liver, but in both kidneys and widely metastasized to her lymphatic system. They thought she wouldn’t have very much time with us, but she just turned six months old and is in remission. We know the chances of relapse are very high, but we’re maintaining hope and I’m happy to chat with you or answer any questions.