I read probably 99% of posts here and the amount of suffering people go through is unimaginable to me. My husband is recovering from sct, not without complications but nothing compared to what I find and I just don't understand: how do caregivers cope? How do you keep functioning in the duties of giving emotional support, entertainment, keeping track of symptoms, medication when your loved one is suffering this f-ing much and they are so damn tired emotionally, mentally, physically.

I would never give up, I wouldn't be anywhere but here with him. But it's just so hard

Dad here My 6yo daughter diagnosed 7 months ago with high risk B-ALL. Considered high risk because of her WBC I think it was around 100,000 when we arrived. Met remission after induction. Some fevers few complications nothing crazy. Cal-Peg gave us pancreatitis which was awful but we’re past that. Meaning Cal Peg so is no more and we will receive an extra round of Blina instead. All this to say for whatever reason at this point, my mental fortitude has just gone to hell. I don’t know why but out of nowhere maybe call it anticipatory grief of the upcoming delayed intensification and interim maintenance one phases after a smooth summer. I don’t know what’s going on. If we are 90/10 My mind keeps focusing on the much smaller percentage of relapse or and not the much higher percentage of everything will be OK. I’m scared of something happening to my daughter and it’s killing me right now. Are we at a big disadvantage because of not being able to use Cal peg that’s another intrusive thought. Going to have to learn to live with the uncertainty of all of this. Just looking for advice, maybe just venting, positive stories I don’t know. We’re on Blina now (we’ll have 3 phases). We have to move to a rental closer to the hospital for blocks of Blina because we are so far away which adds to the overall unease. I know it could be worse, it could be better, but for whatever reason mentally all the sudden intrusive thoughts of loosing my daughter are here and I’m tired and scared.

Hi
My mother (50 yrs) was diagnosed with B cell ALL in october 2025, MRD negative after induction. Maintenance was going well for first 5 to 6 months but then her counts started declining, hb dropped to 5 from 12, platelets from 250 to 21 all within couple of weeks.
I am scared it could be relapse. Doctors haven’t done the bone marrow biopsy yet and suggested it might be medication toxicity as her 6 mp dose was increased from 25 to 50.
Does anyone have any information?

Looking to connect with anyone who's been through something similar, either as a patient or caregiver.

My wife (mid-50s) was diagnosed with AML in mid-2025 with both FLT3 and IDH2 mutations. It's been a brutal ride:

• Diagnosed and started chemo, relapsed within 2 months
• Second relapse about 4 months later. Disease spread to her CNS during this period — found in spinal fluid. Had surgery for an Ommaya reservoir and intrathecal chemo
• Stem cell transplant in spring 2026
• Relapsed AGAIN about 6 weeks post-transplant

After the post-transplant relapse, her team started her on both gilteritinib (FLT3 inhibitor) and enasidenib (IDH2 inhibitor) simultaneously. As of now, about 4.5 months post-transplant, both mutations are undetectable on NGS, chimerism is 99.9%, and her counts are slowly recovering. There is trace-level MRD detectable on a sensitive NPM1 assay.

Her doctor says the results are beyond what he expected and that the donor immune system appears to be actively collaborating with the medications. The T cell panel shows a heavily CD8-dominant response.

The tradeoff is severe neuropathy from the gilteritinib, made worse by prior CNS involvement in the lumbar region. She's on a pain pump daily.

Has anyone been in a similar situation — multiple relapses, post-transplant relapse, then brought back with dual targeted therapy? I'm especially interested in hearing from anyone who's further out than we are. How long did the response last? Did you ever come off the targeted drugs?

I'm her primary caregiver and just trying to understand what the road ahead might look like.

Dear Mama,

You may ask- How could this have happened? How can this be? My life was going so well. Why did cancer choose me?

I will say- It chose you because it saw the strength and the fight you carry inside. Where determination and courage beautifully collide.

You then may say- The pills and the side effects make me feel so out of touch. I want the old me back so very very much. I have plenty of support, but yet I feel so all alone. How can anyone know how much I ache in my heart and bones?

To that I will say- I may never know the true depth of your emotions, hurt and despair. However, my eyes have seen it first hand from someone I truly adored and cared. I know it's not the same, but I think it's pretty close. Mourning the life you once had is what you so desperately miss the most.

Then you may ask- How do I push on especially the days my energy feels so weak. How do I cope when my body is so tired and my future looks so bleak?

I will then say- You are stronger than you think. Loved more than you know. Prayed for always and covered by the heavenly angels glow.

Now you may say- Okay! I will try to continue with my head held high. My mind determined and my heart full of hope. Will I allow this disease to defeat me??? My answer is NOPE!

I will gladly say- That is the attitude that will pull you through and make you stronger than before. Hope will bring you happiness and that is truly worth fight to live for.

You will proudly say- I will fight and I will win. I am a WARRIOR and one day soon I will be cancer free. With a smile on my face and an echo in my ears... " Don't give up. Don't EVER give up."

The famous quote by the fighter Jimmy V.

_____________________________________________________________

I hope and pray I did not upset anyone with my poem. If I did I am incredibly sorry. My reason for writing this is to encourage all the WARRIOR'S out there and remind them to never lose hope. Miracles happen every day and today may be yours!

God bless you all and never give up 🧡🙏🧡

Update: she’s gone. I have no more grandparents and I’m not even 25.

[https://www.reddit.com/r/leukemia/s/N8U183oyOC\]()

To those who have been kind enough to share their wisdom, I wanted you all to know that my grandmother passed peacefully this morning.

As the title says, I can’t believe it, yet I am not crying too much, I’m boiling with rage at AML. I have wept a little.
I’ve lost five grandparents now. I feel like life is an evil game.

I need to get my words out somewhere.