5 year old niece with DIPG/DMG Brain Tumor

[Anonymous]

I am sorry, OP. I have a close friend who lost her son to this wretched disease. It’s unbelievably cruel.

[Anonymous]

I'm so sorry OP. This is a terrible disease, and there's never been a happy outcome. My heart breaks for the families trying desperate treatments that might prolong the inevitable. I pray you all find peace to love and enjoy the precious baby for as long as you have her, and her suffering is little.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP: We found out she had the tumor in July of 2022 and she passed away June of last year 2023

The parents even took her to Texas - won't mention name of clinic - and paid privately out of pocket but there was zero improvement made on her condition.

Thank you to everyone who replied.

You should mention the name, because it is downright cruel to take money from the parents for a child who has a 0 percent chance of survival. And to entice the parents to take the child to another state for false hope.

+1 Poor baby, and her poor family.

[Anonymous]

I'm so sorry OP.

[Anonymous]

I knew a child with this illness. Sorry but that did not have a happy ending (and she had surgery). It is an awful disease. Perhaps sadder for a teen because they seek independence, and become totally dependent.

All you can do is be there for your family member (more her parents). Find out what that means to them (perhaps not disease centered, but giving them breaks, distractions, doing happy/normal things with their other kids, cooking, chores, etc.). Ask them what would be helpful, how you could make their days easier, which may change as time goes on.

[Anonymous]

Sorry, I did not realize this is an old post.

I hope the family has support. They may want to look into an organization called the Candlelighters Foundation.

From my work with bereaved parents, I advise you to mention your niece from time to time (birthdays, missing milestones, or when you are reminded of something happy about her).

It is important to parents that the child not be forgotten.