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.
3
u/ilikeplants91 Jun 17 '25 edited Jun 17 '25
I second the recommendation for grief counseling, but also, try to find other parents who have been through the same thing. My DMs are always open - my daughter was diagnosed with a rare form of blood cancer at 4 months old, and we're now almost a year into treatment.
One thing that helped me early on was my sense of responsibility to be happy for my daughter. Because I genuinely didn't know how long she had, I wanted to be the best parent I could for her, and that meant being as okay as I could for her. I'm not saying you should feel any shame or guilt for the way you feel, it's so important to be kind to yourself. And it's totally okay and normal to grieve the life that you had before diagnosis. But do your best to take things a day at a time, and not dwell on what might happen. Because you will have plenty of time to grieve if and when it does. I know all of that is much easier said than done, though.
I'm so sorry you are going through this.
2
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.
1
1
u/onlyhereforcoolfacts 24d ago
I’m in school to be a mental health therapist and also have a brother who is 14 and has had brain cancer for 4 years. Absolute YES to everything you said.
2
u/Redoktober1776 29d ago
When our son got sick, I wasn't prepared for all of the appointments we would have. In hindsight, I should have considered visiting with a mental health professional as one of those necessary appointments because caregivers need care and feeding as well. This is an endurance race. There are times when you can think about the big picture but there are many days when you are just focused on getting one foot in front of the other. To cope, I pretended like everything we faced was just a temporary setback and life would return to normal someday. That was delusional. Emotionally, it was easier for me to hope for the best, but I should have invested some time in preparing for the worst. Or, at least acknowledging the trauma we were experiencing for what it was.
1
u/Kind_Bullfrog_3606 Jun 17 '25
It’s already been said, but worth repeating to reach out to child life and ask if they can put you in contact with a therapist or grief counselor. I forced myself to ask for my wife and I even though speaking about what I was thinking was the last thing I wanted to do. It helped a lot.
Seek a psychiatrist if you need. No shame in needing help. I myself have suffered with anxiety and depression for decades, and I honestly think without meds I would have drowned. I still was and am down often, but nowhere near what I know I’m capable of without my meds.
Seek out other parents and support groups. If one isn’t a fit, just stop and seek another, but don’t give up on it altogether. It’s like my doctor said - “you don’t stop dating altogether just because someone wasn’t the right fit”.
There are many foundations with support groups or mentor programs. Social work might be able to put you in contact with some that fit your needs, as well as other types of support you might need.
Also lean on your support system. Some people will show up for you who you’d have never guessed. And maybe others that you’d expect to rush to help will never show up. Don’t waste energy on the ones that don’t and don’t worry about hurting feelings and keeping anyone that drains your energy away. You and your kid need that energy, and anyone who will deplete that resource can go.
And last - give yourself grace. You are part of a club that nobody wants to be part of or asked to join. And it’s effing hard. My sons battle has been going for a little over a year and I still cry almost daily. Feel your feelings and feel no shame in that. But then dust off and move forward.
Kids are resilient. I wish you and your family health and healing on this journey.
9
u/mgnwfy Jun 16 '25
Speak to child life at the hospital to get you in touch with a grief counselor. And honestly it's really taking it day by day, and celebrating the good things when you can. I compartmentalized to cope, and that wasn't healthy either, I wish I had reached out to the grief counselor earlier while I was in the thick of it.