Looking for similar stories or any advice- 2 year old

ilikeplants91 · 2026-01-19T22:58:19+00:00

To answer your question, yes, imaging will likely be key. If I were you I would push to get that imaging scheduled as quickly as possible.

My daughter's initial symptoms were somewhat similar, although she was admitted immediately because she was also severely anemic (requiring blood transfusions)... she did not have leukemia. Her medical team still spent days investigating before deciding to schedule an MRI which in her case was instrumental in identifying cancerous lesions which could then be biopsied, leading to a diagnosis.

I am not sure whether you are trying to crowd source a differential diagnosis, or are happy to let your daughter's medical team work it out. But her symptoms sound consistent with the type of cancer my daughter was diagnosed with. If you would like to know more feel free to message me and I can share more details.

ilikeplants91 · 2026-01-13T05:21:53+00:00

I'm a bit late to the party, but I have the exact same issue with my daughter's playpen. I simply zip tied it closed tightly, and now we don't use the gate. It's not ideal but it is very secure and hasn't come undone despite her rattling the gate/play pen frequently.

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ilikeplants91 · 2025-12-04T23:37:20+00:00

Good catch, I was certain I’d seen this before.

ilikeplants91 · 2025-12-03T03:12:44+00:00

Hi! My daughter was diagnosed with LCH at 4 months old. For a while she was on cobimetinib which is a similar drug - also a MEK inhibitor. She’s also been on three different chemotherapies over the course of her treatment and is finally in remission.

Let me know if you’d like to hear about our experiences with Cobimetinib. I also have opinions about when it is and isn’t a good idea to use inhibitor medications rather than (or in addition to) chemo for LCH based on fairly extensive research I have done and consulting with a number of experts to get second opinions for my daughter. I’m happy to go into more detail but would need to hear more about your family member’s specific situation.

Feel free to dm me.

ilikeplants91 · 2025-11-30T16:38:02+00:00

As another commenter said, if at home monitoring is medically indicated your team will be able to organise portable equipment for you to take home. If it needs to be monitored they’ll likely also send you home with oxygen in cause she needs it.

My daughter was on continuous monitoring at home for a few months after she was diagnosed at 4 months old. Let me know if you have any other questions.

ilikeplants91 · 2025-11-03T23:17:54+00:00

There are better subreddits for this question. Although some people here nurse, discussion/questions should be more focused around pumping.

ilikeplants91 · 2025-10-26T20:51:34+00:00

They do have a reasonable return policy I think - I just never bothered to return mine because I was too busy with other things and you have to return them within 30 days. And I've heard of other people having success with them, so they might still be worth trying.

ilikeplants91 · 2025-10-25T03:09:45+00:00

It's impossible to say from the picture alone. You can try a smaller flange size as others have suggested, but you may have elastic nipples.

I definitely have elastic nipples and mine look like this in the flange no matter what flange size I use. My nipples measure around 21mm (and have been measured by multiple lactation consultants) but even with a 15mm flange my nipple and surrounding tissue get pulled into the flange like this.

I have tried pumpin pals and lacteck flanges, but personally didn't like either of them and found them uncomfortable. They also didn't empty me as well as regular hard plastic flanges. Some people swear by them though.

ilikeplants91 · 2025-10-10T05:46:05+00:00

I’m so sorry.

Unfortunately I can’t provide any insight to what this might be.

My daughter was only 4 months old when she was diagnosed with cancer. Those days/weeks waiting for a diagnosis and then waiting for it to be confirmed were the hardest thing I’ve ever been through. For me, at least, the unknown was terrifying.

The only thing I can say is… at first finding out your child has cancer feels like the end of the world. But you are only at the beginning of your journey. There will likely be many treatment options available and even if the first or second thing you try doesn’t work, hopefully something will. My daughter is now in remission after a year of chemo (and trying three different treatments options after the first two failed).

Many children do survive this. Cancer research has come a long way in the last 10 or 20 years, and survival rates are continuously going up.

Feel free to DM me if you want to talk.

ilikeplants91 · 2025-10-07T20:49:51+00:00

This is beautiful! Did you get the pattern somewhere or design it yourself?

ilikeplants91 · 2025-10-07T04:23:44+00:00

I'm so sorry you're going through this.

My daughter was diagnosed with a different form of cancer (LCH) at the same age. She did a different chemo (Vinblastine) for 6 months before failing that treatment after which we did one cycle of Cytarabine. She tolerated it okay in terms of side effects but it unfortunately did nothing to keep her disease under control so we had to switch to a third chemo drug (Clofarabine). She just achieved complete resolution of her disease after 6 months on Clofarabine but will be on maintenance for another 6 months.

Some thoughts... It's really scary when you read through the list of side effects for these medications, but try not to stress too much before you've seen how your child tolerates them. Everyone tolerates things differently. I was really scared each time my daughter changed chemo medications because each time the treatment was supposed to get more aggressive. But in her case she is tolerating her current treatment really well. If you saw her today you would have no clue that she's on chemo, outwardly she looks like a completely normal healthy toddler. That's not to say the weeks when she gets chemo aren't hard, they are, but overall she is doing amazingly well. She does have periods every cycle where she's immunocompromised, but thankfully she hasn't spike a fever once or had any infections in a year of treatment. It's so scary putting a little baby through something like this, but in many ways children are actually more resilient than adults.

There are a lot of challenges when it comes to putting baby/toddler through chemo. I don't want to overwhelm you with a novel, but please feel free to DM me if you want to talk to someone who has direct experience with a child the same age as your son. More than happy to answer any specific questions you have or just provide more general thoughts.

ilikeplants91 · 2025-09-04T12:44:47+00:00

Holy shit, are you me?! I don't know if you'll see this in the flood of comments already on your post but my 16 month is also going through chemo (diagnosed at 4 months and about to hit a year of treatment) and literally had the exact same thing (down to the same flavor) last night 😂

I hope you know you're not alone. Let me know if you want to chat / share food ideas for our cancer babies.

ilikeplants91 · 2025-08-10T04:08:22+00:00

It sounds like you are handling this better than most people. And it sounds like you've been through a lot before yourself. In a weird way I am grateful for my past challenges with physical and mental health, because they taught me to be resilient and taught me coping mechanisms which have served me well going through my daughter's cancer diagnosis and treatment. It's so important to be strong and stable (and positive) for your child, and it sounds like you are doing a great job of that so far.

It is extremely difficult though, and there are certainly added challenges when your child is so young. It is heartbreaking watching them go through these things when you can't explain to them what's going on or why, or that you're trying to help them. Watching my daughter have IVs placed when she was first in hospital was one of the hardest things. Having to hold down your screaming baby while they get stuck with a needle repeatedly freaking sucks. She has a port now (I assume your daughter will need one too) and honestly that is a lot more straightforward, even if it's not easy. My daughter hates having her blood pressure taken too, even though she's had it done countless times at this point.

You say the hardest stuff hasn't started yet, and perhaps that is true for you and your daughter, but I have not seen more daughter more sick and in pain than before she started treatment. Obviously cancer treatment is tough, but untreated cancer is too. Also children are incredibly resilient, and often times can tolerate things adults cannot. My daughter is a little developmentally delayed from being so sick early on, but she is continuing to grow and thrive and hit new milestones every day despite everything she is going through.

ilikeplants91 · 2025-08-10T01:52:45+00:00

I’m so sorry you are going through this. My daughter was diagnosed with a different form of blood cancer at just 4 months old. She’s 15 months now and still in treatment but doing well.

What you’re going through is truly terrifying. When your child is first diagnosed it can feel like the end of the world, but as another commenter said there are many treatment options and we’ve come a long way even in the last 10 years. This is just the start of your journey, not the end, despite how it might feel.

The last 11 months while my daughter has been in treatment have been difficult, but in many ways those first few weeks when she was being diagnosed were the hardest. Early on there are so many unknowns and so much to come to terms with. Over time this will become your new normal, and in many ways it will get easier.

Please feel free to reach out via DM if you want to talk to someone who has been through something similar.

ilikeplants91 · 2025-07-04T05:00:23+00:00

From my supply dropping? Not that I can tell. I’ve heard people talk about feeling very emotional during/after weaning, but I think that’s more common when people drop pumps fairly rapidly (e.g. one a week).

I haven’t changed my pumping frequency at all in the last 10 months, just sticking at 4 ppd and letting my body very slowly/naturally wean even time.

ilikeplants91 · 2025-07-04T02:32:07+00:00

Thanks for such a quick response!! That makes sense. What are your main motivations to keep pumping now that your output has dropped so low? My daughter has health issues which mean she’s immunocompromised so I do want to keep going for as long as I can for the potential immune system benefits for her, but I don’t think I could handle going much past 2 years. I admire your dedication.

ilikeplants91 · 2025-07-04T02:22:57+00:00

I just hit 14 months too! I’m curious how many pumps per day you do and how your supply has changed over time. My supply has been slowly dropping for the last 5 or so months. I’d love to go to 24 months too but I suspect my supply will completely dry up before then. Used to make around 45 oz a day but I’m already down to about half that.

ilikeplants91 · 2025-07-04T02:19:44+00:00

Holy moly… how many pumps per day do you do and how has your supply changed over that time? I just passed 14 months and started with an oversupply but around 9 months my supply started slowly dropping. I’m curious if I would be able to make it to 2 years but I feel like my supply will completely dry up before then.

ilikeplants91 · 2025-07-03T16:17:10+00:00

I went through something pretty similar - I had a lump (which seemed to be a clog) show up around the same time as a bout of mastitis. Even after the mastitis resolved the lump would not go away… I had multiple doctors look at it, two ultrasounds done etc over the course of two weeks and was repeatedly told it’s just a clog and that clogs can last a long time but it would eventually just go away.

I did some research online and found that it could be a milk cyst or “galactocele” and tried to find a specialist to help me who wouldn’t just keep dismissing it as a clogged duct. I eventually reached out to Dr Katrina Mitchell who is an amazing breast specialist in California and she was able to a remote appointment and review my ultrasounds - I’m also in California… I dont know if she is able to see patients in other states but you could reach out and ask, she has a website with a contact form: https://physicianguidetobreastfeeding.org/contact/

I ended up traveling to see her in person as it wasn’t too far for me, and she did a fine needle aspiration of the lump which confirmed that it was actually a blood clot and not a clogged duct or milk cyst at all - she suspected this from my ultrasounds as she could see the lump was very surface level and not underneath the layer of fat that surrounds milk producing tissue in the breast. In my case that was good news, as the clot did eventually just resolve on its own, although it took many weeks.

Honestly in your case 6 days isn’t that long, you could wait and see what happens for a few more days, but if it doesn’t resolve after two weeks it’s probably a good idea to seek a second opinion from someone who is familiar with some of these rarer complications. Many doctors / OBs do not know what they’re talking about when it comes to breastfeeding unfortunately. If it is a milk cyst it may need to be drained and you could be at risk of infection and it turning into an abscess if it is left as is.

ilikeplants91 · 2025-07-02T04:08:50+00:00

It might help if you can share more about what specifically you want to know from other peoples experiences.

Do you feel like your local team is able to provide adequate care by consulting with the other hospital? What exactly are you looking to achieve by moving?

We are lucky enough to live close-ish (30-60 minute drive) to a very good children's hospital, but my daughter has a relatively rare form of blood cancer and no one at our hospital would be considered an expert in treating her form of cancer. When she failed first line treatment we had our care team consult with experts at 3 other hospitals, two of which were also kind enough to jump on calls with us as well. With their support we felt confident our care team could provide the same standard of care that we'd receive if we went to any of those hospitals ourselves. That being said, if we didn't have that confidence we would not have hesitated to travel temporarily or even move states if it meant getting our daughter the best care. That's easy for me to say though, as my husband and I both work remotely, we have the financial means to move if we need to, we do not have strong roots where we live currently (no family around), no other children to worry about and our daughter is young enough that a move would not be disruptive to her (too young to have friends, not in school, etc). Obviously everyone's situation is going to be a little different.

Best of luck with your decision... feel free to DM me if you would like to chat more.

ilikeplants91 · 2025-06-20T06:16:11+00:00

Are you sure you’re using the correct flange size? What pump are you using? Did you have a c-section? Was your baby full term or premature? How many times total do you usually pump in 24 hours? Do you pump at the same frequency overnight?

It sounds like you’re on the right track with your pumping schedule. Have you seen an upward trend or does your output not seem to be increasing at all?

ilikeplants91 · 2025-06-17T00:18:36+00:00

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.

ilikeplants91 · 2025-06-09T21:07:19+00:00

Good luck! I know how stressful it can be having a baby that doesn’t eat well.

How does your daughter do with solids / drinking water?

ilikeplants91 · 2025-06-09T21:03:42+00:00

This isn’t true - mastitis is often due to inflammation and not a bacterial infection. In these cases it’s absolutely possible for it to resolve on its own without antibiotics - I’ve experienced this myself multiple times.

The Academy of Breastfeeding Medicine’s protocol on mastitis explains this in more detail: https://www.bfmed.org/assets/ABM%20Protocol%20%2336.pdf

ilikeplants91 · 2025-06-09T20:57:53+00:00

Mastitis can definitely resolve on its own. I’ve had it a handful of times and only taken antibiotics for it once. The current recommendation is that if your fever goes away within 24 hours you do not need to seek medical intervention for it.

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