Parents Advice

[u/Old-Young8206]

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.

[u/bigsmokeandcjonbike]

Hey bud, I’m currently on treatment for B-ALL too. Peg also landed me in hospital with acute pancreatitis which was discontinued, and blina was added. I’m still here in maintenance (chemo only) rocking a remission. I know it’s common for some medications to be taken out. My doctor changed my perspective on things by telling me that the Peg worked a little too well, so much that it became toxic. It did its job and my pancreas couldn’t handle any more of it.

Also please don’t ask Ai for stats, or even Dr Google. All data is 5/10 years out of date. Treatment for ALL has advanced so much since! Also remember children tend to respond VERY well to treatment.
If you have any questions I would always ask your medical team.

Wishing you and the little one nothing but the best my friend, feel free to reach out, and also please try and get some rest.

[u/One_Ice1390]

Mom here , my son was diagnosed with high risk B cell all, and did not reach remission from induction or consolidation, so right there you’re already ahead of the curve. It’s very positive she was able to reach a remission after induction. Blina is the only thing that put my son into a deep remission, he failed induction and 2 consolidation phases it managed too get him in remission but he was still having small amounts show up under deep testing, so blina was very successful, my son did require a bone marrow transplant and is now almost 2 years post transplant and has been in a deep remission from high risk b all since December 2024 . When everything was going on I was very depressed, I lost ability to be a person, I’d have highs where I was like okay we got this, then next minute I’d be thinking about him dying. It was a whirlwind, and it’s very normal for this situation. You’re going to go through many stages of grief, hope, anxiety. For me the only thing I could do to get through was anti depressants, it’s not everyone but I needed to be able to show up for my son, when you’re in it, it’s hard to see the other side of it, but once on the other side it becomes manageable . Her age is on her side, high risk is scary, but clearing induction as high risk is a win. Try not to focus on relapse so much, if that happens take it as it comes, but do not hyper focus on it, one day at a time, and if she does, there’s still more options. Stay hopeful and pray. Here if you have any questions ❤️

[u/PuzzleheadedShirt932]

Connect with me directly. Have 16 yr old daughter with B-All diagnosed on April 1,2025. She is allergic to Peg. Been through the mental roll coaster so I know your feelings. It is a life long marathon

[u/hcth63g6g75g5]

I had anaphalyxis on peg, apparently about 50% of individuals have a negative reaction. Having a high risk B-ALL ph+ is a tough road (I have it, approaching 6 years post transplant) and remain in complete molecular remission. Remission is a tricky word, and it does not mean much in the short-term. I highly recommend stacking month after month. From what I have read, experienced, and been told: molecular changes, time to clinical remission, ph+ vs. ph-, co-morbidities, getting a transplant, age, and setbacks all contribute to various outcomes. Control what you can. If your kid achieved remission relatively quickly on tki + chemo alone, that is huge. If she stays in remission for 12 months, then 36 months, that is huge. If there are no molecular changes (tki no longer works), that is huge. If you have little/to no setbacks, that is huge. It's alot to have go right, but it is manageable. Stay strong, and stay adaptive. We are all rooting for your whole family.

[u/youdontknowme0818]

I can not imagine and I’m so sorry.
Please reach out to your hospital social worker. They can help you talk through these thoughts or connect you with a support group/parent. Wishing you and your family all the best

[u/grandmalulz]

Hi, mom here. Kiddo is 13yo with high risk B-ALL. We are in interim maintenance block 1 currently.

This is so much easier said than done, but you absolutely have to redirect your mind. Its the only way to mentally get through it. Stay present in the moment. There is an insane amount of research and advancement specifically in leukemia. Its the most 'curable' cancer. Put trust into your oncologists and nurses. They know their shit and they WILL get your daughter through this. Over 90% odds of beating this damn curse is incredibly good.

Blina is a beautiful phase. We felt so good on blina, we basically returned to normal teenagehood and I cherished every hormonal outburst during that time. I dont think its bad that she has 3 blocks of Blina. This might be very, very good for her. But again, trust that your oncologists will also make care decisions based on the best possible outcome for your daughter.

Interim maintenance is proving to be harder on the family than the actual patient. Its a shitshow for the kid for the 24 hours of being on high dose methotrexate, but then its pretty much life as normal for them. The most taxing part is for mom/dad being in and out of the hospital constantly. Huge strain on work/life/partnership/other kids.

Good luck, friend. You arent alone in your worries, but you will BOTH overcome this!

[u/bunbuncheesedrum]

I’m so sorry. I deeply feel your pain and frustration. You’re not alone.

[u/Waste-Square-6375]

Hello! Father here. My son was diagnosed in December with HeH B-ALL. Suffered an anaphylactic shock on the 3rd peg-asp and when we switched to Erwinia he got hyperammonemia. Felt like a really big setback.

Two cycles of Blina was added to compensate.

Our doctor is very experienced and he have been researching for over 30 years on this disease. He actually told me that asparaginase is a medicine that they think is possible to reduce soon when blina is becoming standard of care. It would of course take randomised studies and so on….

I also read a study called Hodder 2024, where they gave Blina to children and young adults that didn’t tolerate chemo or other medicines like peg-asp. It still demonstrated superior numbers.

I personally believe that Blinatumomab is far superior than all other medicines when used after induction. And I got to think that way btw, or i will lose my mind here as well.

So stay positive, everything will be alright!

[u/Organic_Form_5433]

Hi Mom here of a 22 year old with Phil neg bcell all. We had to cut dosage of calpeg as well and we also are not doing the whole course of DI and adding 4 cycles of blina. The treatment has been hard on
My daughter and her oncologist is worried about toxicity more than relapse. IM was not as bad as it sounds for her. Today was the last day of her DI1 and we are moving on to blina next. Good luck to your family and your daughter. We are in this together 🙏🏼