r/pediatriccancer • u/DetectiveOk8152 • Feb 17 '26
Pineal tumor + rhabdoid tumor predisposition syndrome (smarcb1 germline mutation)
My daughter was diagnosed with a pineal tumor three months ago at just six months old. It shattered us. But my husband and I immediately went into fight mode — focused on doing whatever it takes to cure her.
Last month, we learned she has a germline SMARCB1 mutation and is highly predisposed to developing rhabdoid tumors. Now, as we battle this pineal tumor, I can’t help but wonder if we’re going to be playing whack-a-mole for the rest of her life — treating one tumor only for another to appear.
I find myself questioning everything. Is the pain from chemo and surgery worth it? Are we truly fighting for a future, or just buying time — and time spent almost entirely in treatment? This doesn’t feel like any way to live.
And yet, stopping treatment feels like a death sentence. So I hold on to the tiny bit of hope I have left, even when it feels impossibly small.
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u/LittleDear1 Feb 17 '26
Not exactly the same, but my son has an RB1 mutation (like SMARCB1 it causes tumor suppression to fail) that predisposes him to secondary cancer. It doesn’t seem to be quite as severe as your daughter and so I don’t want to downplay your struggle, but wanted to give you my perspective. He has bilateral retinoblastoma, started chemo at 13 months, finished after 6 months, but will continue to have treatment under anesthesia every month til he is 6 years old, plus any other treatment if he gets a secondary cancer. I’m not going to lie- it’s hard, and I’m nervous at each appointment that there will be new cancer. However, with all of the research into gene therapy and my son being so young, I try to be hopeful about his future. I will fight for him as long as it seems feasible, and if things get worse, I will be thankful for every moment I get to spend with him. He will always know he is loved, and I think as parents that is all we can do.