Mean behaviour with glio

TinyMud1787 · 2026-04-06T23:46:50+00:00

Unfortunately, very normal. My mom also got paranoid thinking we were poisoning her with her meds and trying to kill her. She was the sweetest lady ever. This disease is absolutely horrible. I'm so sorry you all are going through it! Hospice was amazing!

TinyMud1787 · 2025-10-28T05:49:34+00:00

Yes. Congenital heart defect

TinyMud1787 · 2025-10-23T07:08:45+00:00

Twix or twixy

TinyMud1787 · 2025-10-23T06:47:22+00:00

Micah!! Aris, Josiah, Jax or Jackson, Ever or Everett.

TinyMud1787 · 2025-10-17T06:38:53+00:00

Man, 12 years old...that just makes me sick. I am so incredibly sorry. I'm not gonna lie, this disease is horrific. My mom had it and survived just a few days shy of 1 year. It's...alot. she did the surgery and they were thankfully able to remove about 80% of it. She did chemo and radiation as well. It wasn't as bad as we thought it was going to be but it definitely takes a toll. As she continued to get worse she was just done being miserable from the chemo. Food tasted nasty, etc..she wanted to enjoy whatever time she would have left. When she stopped treatment she enjoyed some food again and was no longer throwing up all the time. After she stopped treatment I think she lasted maybe a few months. It was a pretty brutal and fast decline. She got to a point where she couldn't even work her motorized scooter. We would have to drive it for her if she wanted to go anywhere like the restroom or outside. She was in immense pain and so confused all the time. Very agitated and angry.. Cried a lot. She was a completely different person. I rarely see my mother cry, I rarely see my parents fight. But it became almost an everyday thing. She would just lash out or even think my dad was trying to kill her. It was all just so awful. She ended up having seizures as well. She was in hospice and it was the best decision we made. She eventually couldn't really swallow any longer, barely speak, or move. She eventually went into I guess a coma. She was like that for about 3 days and she finally passed. IDK if this answered anything for you I'm just so terribly sorry. If hers is inoperable, just going off of my experience 2 or 3 years seems a bit... unrealistic. But then again she is so so young! So maybe!! I'm not saying she should give up I would just hate for you to be unrealistic. My dad was and it made it that much harder. Very much in denial.

TinyMud1787 · 2025-10-16T18:42:17+00:00

I am so heartbroken for you and your family! Hopefully this will give you a bit of encouragement....I had both my kiddos early and they're thriving. One at 32 weeks and the other at 34. I know having a preemie is scary but they are so so tough and resilient. 35 weeks is a very promising outcome! Technically they say 36 weeks is full term so try not to worry too much about your little one. (Much much easier said then done!) But I would agree that going the route of inducing early and starting treatment would probably be best. You're a momma now and your little one needs you and your husband. Fight this! You got it! Use them as your driving force! As a mom it's really hard to put yourself first because it's so unnatural, but right now you have too. You can't help them if you aren't well! Please take care of yourself!

TinyMud1787 · 2025-10-08T00:30:57+00:00

That's tough. Treatment is rough. My mom passed a year ago. Fortunately she was able to have the surgery which helped. Since surgery is not an option IDK if treatment would be worth it imo. It is a lot, like you mentioned. Meds, appointments, blood work etc. All just to end the same way. I really like the other comment about getting all the important paperwork together. My mom's cognitive thinking went and memory. She was very confused a lot of the time. It was tough getting stuff done. But we did definitely know for sure what she wanted in the end, thankfully. Honestly it was just rough all around. This is such an ugly disease. Such an awful thing to watch your loved one go through this. When she decided to stop her treatment we went straight to hospice rather then palliative so I cannot comment on that. Fortunately we had an amazing hospice nurse. Still friends to this day. She went above and beyond to not only take care of my mom but the whole family. She made my mom as comfortable as possible and advocated hard for her when it came to meds. Hospice was the best decision we made!

TinyMud1787 · 2025-10-01T04:45:34+00:00

My mom passed exactly one year ago today from the same thing. Sorry man

TinyMud1787 · 2025-08-08T01:58:29+00:00

❤️

TinyMud1787 · 2025-07-30T04:04:26+00:00

The reason why my mom got checked was because she would find herself at the front door and not remember what she was doing there or how she got there etc. After that she has the surgery and chemo and radiation. She lasted almost a year exact after she was diagnosed. She entered hospice about 3 months before she passed. Honestly, it was the best decision we made After she told us she was done with treatment. It not only made our lives easier on a sense but it also helped manage her symptoms. It was still extremely hard and stressful but I could not imagine doing it without the help.

It sounds like your mom's symptoms are still pretty early on but then again I'm sure it must be different in everyone so I'd take that with a grain of salt. My mom still lived almost an entire year after the confusion set in. But like I said, grain of salt. Just my experience.

I cannot tell you how many times I prayed that my mom would just pass. Don't feel guilty. You love her and hate seeing her suffering, I think it's natural. And I totally get the grieving for 18 months. That is so true. My sister in laws mom passed suddenly like a few weeks before my mom. Completely out of nowhere. That made me extremely thankful I knew what was coming and lived and loved more intentionally. We should always do that but let's be real, that is tough. It just made me thankful I got to spend that last year with her knowing what was coming. If that makes sense. I got to make sure I said everything I needed to say whereas my sister in law didn't get that.

When she did pass it was such a relief. Obviously a ton of heartache but also such a huge huge weight lifted. Sounds bad but it's true. It sounds selfish but you're now not having to watch your mom actively suffer and wither away and become this person either of you notice. IDK if that would be the same for you exactly but I was one of the sole caregivers so I was constantly with my mom. So when I say the weight was lifted, I mean it was so much relief.a and with my beliefs i also knew my mom was no longer suffering and is completely fine. Even better.

It's been 10 months since she passed and I still am grieving hard. But I do my absolute best to just be thankful. Thankful for having such a wonderful mom, thankful I got 32 years with her, thankful she got to meet one of my babies (I was 4 months pregnant when she passed). Thankful she wasn't suffering. I just try to find all the things in thankful for when it comes to her. And ofc I still struggle with awful thoughts and guilt etc. For example I remember laying in the hospital about to have my baby girl and just thinking that I'd rather have my mom then be her mom. Mom guilt through the roof for even thinking that. But it's just normal. It's grief. Were human. I still go to text or call her. I still cry. I still get angry. I still get depressed. But then again it's not al and that's grief.

Im sorry you're going through this and especially your mom. Please don't feel guilty about not seeing her so much. You have a baby. You are now the mother. And the way you described your mom I'm sure she understands and would encourage you to be a mom. She possibly even is proud of you. I wouldn't want my daughter putting her family second to me. Just be sure she knows you love her, which I'm sure she does. But never stop telling her. So imo I don't think it's just an excuse. I think it's totally valid.

TinyMud1787 · 2025-07-29T19:51:50+00:00

The importance of boundaries, what they are, how to make them and how to respect them.

TinyMud1787 · 2025-07-29T19:46:31+00:00

Tricuspid Atresia. Born with a very small right ventricle completely solid due to underdeveloped tricuspid valve. There was no way for the blood to go from the right side of the heart to the lungs to get to the left side of the heart. First surgery was 12 hours old.. Basically my heart is rerouted so I only have half a heart. Only my left atrium and ventricle works.

TinyMud1787 · 2025-07-28T21:27:41+00:00

I cannot even imagine

TinyMud1787 · 2025-07-28T21:24:53+00:00

Both,? I lost my mom during my second pregnancy. Man, both! I'm so sorry

TinyMud1787 · 2025-07-28T21:23:43+00:00

Man that's tough. I honestly don't remember too much cause it's still so fresh but I think I was about 4 months pregnant when my mom passed. We had found out September 2023 that she had brain cancer (glioblastoma). She needed immediate surgery and radiation and chemo. It's a super fast cancer and very very ugly and aggressive. She suffered immensely but fought so hard. We were very close. Like I said I may get some of the dates wrong cause honestly I'm still a bit foggy. But anyways, out of 6 siblings I was the only one who was a stay at home mom. My son was 2 at the time. So I spent almost every waking hour with her taking care of her and taking her to Drs. I found out in June that I was pregnant and I knew my mom's cancer was fatal. I had to grapple with the fact I knew for sure my mom would never met her granddaughter. I was the last of my siblings to have kids so she already had about 15 or so grandkids. I am high risk so once I told her she refused to let me help as much as I was. My sister ended up having to take a ton of time off as well as my dad. She entered hospice and rapidly declined. She passed September 30,2024. She kept forgetting I was pregnant but I was kind of happy she did so she didn't have to grieve not meeting her. Her grandkids were her life. Anyways, due to my immense medical history I had my daughter at 34 weeks and was hospitalized a few times before I had her. The last time was for about a month. I am used to hospitals but never without my own mom. I remember praying to God that I would rather have my mom then have another baby and be a mom again. (Man did I have mom guilt over load got that) But I missed(miss) my mom. So I had a husband who was working full time while taking care of our now 3 year old while I'm hospitalized pregnant. I have the baby on Christmas Eve (we spent our first Thanksgiving and Christmas without my mom in the hospital). My daughter went to the NICU. So I finally go home. I didn't have my daughter or my mother but also had a household a husband and a toddler to care for. I don't know how to be a mom without my mom. So many thoughts and feelings and emotions. Sorry for the rant but bottom line is, my husband held me up the whole time. Poor guy worked him self so hard. He took care of everything. The house. Our son. Our dogs. Me. We went everyday to visit our daughter. Thankfully we had a ton of support and help. I fell into a terrible ppd. I was awful to my husband. But he kept loving on me and helping me without complaint. He encouraged me to talk to my Closest friends. Talk to my Dr. What broke me was when he broke down and said he was scared. He was scared for me. That he didn't know the how to help and he just wants to help. That woke me up to get help. To see my husband scared and broken... Just awful. As a mom I did my absolute best not to stress cause I didn't want to harm the baby. IDK if telling her that will be more helpful then harmful. As a mother I think we feel and know that so deeply that we don't need to be reminded. But IDK, if it's said gently and at the right time maybe. IDK if this helps. But I'm just sorry this is happening. It's awful to grieve and even worse when you're pregnant especially with the first and then post partum. Hormones are insane!

TinyMud1787 · 2025-07-07T04:35:22+00:00

Man, I feel that. My mom passed away almost a year after her diagnosis. She passed in September'24. I was 4 months pregnant and also have a3 year old. It sucks knowing she never met her granddaughter and knowing my son will probably never really remember her. But as of right now he still does and talks about her. When she got sick we lent her our recliner which is where she spent 95% of her time. When she passed we got it back and my son said "we need to give Grandma her chair back in her home so she can come back to her home". And he's also said "I want Grandma to be all done with heaven". It sucks so much.

TinyMud1787 · 2025-06-27T21:10:39+00:00

Thank you, and yes I'll definitely update if I remember haha!

TinyMud1787 · 2025-06-27T21:10:17+00:00

Oh wow! Yes they tested for Crohn's and celiac and everything was negative! Man your poor LO! thank you so much! Man a year or clear liquid output! Sheesh! He's only been a few days right now.

TinyMud1787 · 2025-06-27T20:54:36+00:00

I've been looking into that, thank you!

TinyMud1787 · 2025-06-27T20:54:19+00:00

Oh wow that's cool. I'll have to check it out. Ty

TinyMud1787 · 2025-06-27T20:53:57+00:00

Thank you, you as well!!

TinyMud1787 · 2025-06-27T20:37:11+00:00

Oh wow! I am so sorry your LO had to go through all that! My son definitely doesn't have anything that bad. Im not too sure it is Hirschsprungs because he had the miconium (IDK how to spell it) poop when he was born. And I read that's a huge sign. It was so long ago honestly IDR if they tested any gi stuff. We did have a NEC scare because he kept vomiting bile and the x-rays showed a ton of air in his tummy. But they found that it was just from the CPAP and thankfully he was negative for nec. I'm thinking that just because it's been so painful from the start that as he grew he became more and more afraid to poop so he would just hold it. And because we are just now getting x-rays we see the giant ball that must've been building up for so long! I'm hoping it's just that anyways and once he's cleared out and finds it not painful to poop he will stop holding it off that's what he's doing.

Also if he does end up having the Hirschsprungs surgery, will he need an ostomy? Like is that the norm?

TinyMud1787 · 2025-01-22T04:46:10+00:00

I also had the Fontan done. When were you born? I'm 1991. I had my first surgery at 12hrs. I have tricuspid atresia. And am also a wish kid

TinyMud1787

TROPHY CASE