r/pediatriccancer • u/Agile_Jeweler_1567 • Jun 16 '25
My mental health is tanking.
How do I stop the anticipatory grief, the heavy feeling on my chest constantly? The anxiety and panic around hospital stays? I’m making myself sick with sadness and I can’t stop daydreaming about our old life, about my healthy toddler. Everything was ripped away from us with this diagnosis and I’m not coping. It seems that he’s reacting well to chemo, and his oncologist even mentioned remission by September but we have months long stay for stem cell transplant in October. I don’t know how to deal with any of this. I’m so sad all of the time. He has high risk neuroblastoma with the ALK mutation and it’s unfavorable. He has a massive tumor in his abdomen and some disease in one of his lymph nodes. It was found in his bone marrow but they didn’t see it in the MIBG. We have done 2 rounds of chemo.
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u/WildernJess Jul 23 '25 edited Jul 23 '25
Take care of yourself. Not the bullshit algorithm self-care “this what everyone is telling me I should do”, but focusing some of your energy on doing what YOU need to do to lift yourself up. To do this you MUST ask other people who care about you to take on some of the daily tasks and responsibilities so you have moments to take care of yourself. If that’s asking nurses to stay with your child so you can walk away for an hour, asking a neighbour to do your laundry, asking your social worker to write out your child’s treatment schedule in a way you understand it and follow it, asking your partner or family to stay overnight with your child so you can go anywhere but the hospital to sleep, spending the exorbitant amounts of money to talk to a therapist….. whatever YOU feel you need in order to gain back a bit of energy to keep going. I’m telling you this as someone who is terrible at asking for help, but has been pushed so far that I knew if I didn’t I would crack under the pressure and not be able to be a mom to my child(ren) anymore. We moms are made (by nature or nurture or other bullshit expectations) to give our energy to everyone around us and ask for very little energy given back to us. But that is not sustainable. I am sending you the hugest hugs. My son also has high risk neuroblastoma. No one should ever have to go through what you or your child are going through. But you do have to go through it and you can’t, and shouldn’t try to, do it alone.