5 year old niece with DIPG/DMG Brain Tumor

[Anonymous]

Anonymous wrote:Another resource: https://smashingwalnuts.org/
OP-there is no cure. I’m sorry.

BTW, this is also local.

[Anonymous]

I'm so sorry, OP. As others have said, the ChadTough org is a good resource. I run in their 5k fundraiser.

[Anonymous]

Anonymous wrote:DIPG always reminds me of this Humans of NY story

http://k1nsey6.com/2016/05/maxs-story-humans-of-new-york/

I'm so sorry

https://www.humansofnewyork.com/tagged/pediatric-cancer#21

Really sad. Huge hugs to you, OP, and to your family.

[Anonymous]

A great resource is thecurestartsnow.org and dipg.org . Both are run by DIPG families

[Anonymous]

I'm so, so sorry. I hope you and her parents find the answers you need.
And I hope your niece's days are filled with the people and things she loves best.

[Anonymous]

Anonymous wrote:Does anyone have experience with this? The doctor's/hospitals here are in the area have given her 0% chance of survival. The radiation is not working, chemo does not work, and surgery is just not an option. St. Jude will not accept her nor will Sloan Memorial Kettering in NY. She can't walk or speak very well at the moment - 8 months past diagnosis currently. We are happy that she's still eating and drinking. I'm just trying to see if anyone has experience with a case similar to this? Thank you!

First, I think the family needs an experimental drug fixer. They need, say, a retired clinical trial coordinator or someone like that.

Second, the fixer has to help the family go through the clinic trials list here, figure out whether any are relevant, and figure whether, if the child is not eligible for a clinical trial, the child could still physically get the unapproved drug through a compassionate drug use arrangement.

The question here would be, does the drug physically exist, and is it fairly easy for the drug company to provide? If it just doesn’t exist, or it’s made out of Mars dust, getting it might be impossible. But, if a company is already making a lot for clinical trials, maybe the family can get it.

The one that struck my ignorant lay person Dr Google Mom eye is this one, for Unesbulin:

https://clinicaltrials.gov/ct2/show/NCT03605550

[Anonymous]

Yes to the clinical trials! Those of you saying it is terminal don't realize the amazing progress that has been made on brain cancer in the past few years. Look into Car T therapy. There is always hope until there isn't.

https://www.nationwidechildrens.org/sites/neurooncology/conditions/diffuse-intrinsic-pontine-glioma-dipg?sc_camp=086E963F249742CAA74AFA42EA5E23D5&placement=&target=&keyword=dpig&matchtype=b&hgcrm_channel=paid_search&hgcrm_campaignid=9506&hgcrm_tacticid=13770&hgcrm_trackingsetid=19584&hgcrm_source=google_adwords&hgcrm_agency=other_agency&utm_source=google&utm_campaign=neurooncology-2022&utm_term=%7Bkeyword%7D&utm_medium=cpc&gclid=CjwKCAiAr4GgBhBFEiwAgwORrbGbxbg2wDWWhu39YMRrVPfljsggzMLOYranv2KxEAIHdV2fweiVYxoC7v4QAvD_BwE

[Anonymous]

Anonymous wrote:Yes to the clinical trials! Those of you saying it is terminal don't realize the amazing progress that has been made on brain cancer in the past few years. Look into Car T therapy. There is always hope until there isn't.

https://www.nationwidechildrens.org/sites/neurooncology/conditions/diffuse-intrinsic-pontine-glioma-dipg?sc_camp=086E963F249742CAA74AFA42EA5E23D5&placement=&target=&keyword=dpig&matchtype=b&hgcrm_channel=paid_search&hgcrm_campaignid=9506&hgcrm_tacticid=13770&hgcrm_trackingsetid=19584&hgcrm_source=google_adwords&hgcrm_agency=other_agency&utm_source=google&utm_campaign=neurooncology-2022&utm_term=%7Bkeyword%7D&utm_medium=cpc&gclid=CjwKCAiAr4GgBhBFEiwAgwORrbGbxbg2wDWWhu39YMRrVPfljsggzMLOYranv2KxEAIHdV2fweiVYxoC7v4QAvD_BwE

Please don't oversell this. There are some phase 1 clinical trials of CAR-T cell therapy for DIPG. The limited results are showing a little bit of temporary improvement that are buying some extra months. Months, not years. For a tumor whose median survival is 9 months, a few more months definitely isn't nothing. But it's still terminal. All the patients did still progress and die within a year. Same with ONC-201 and other clinical trials. It's not what I'd call "amazing" progress, nor is it being sold to families that way.

[Anonymous]

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.

[Anonymous]

I’m so sorry. Sending prayers for you and the little one.

[Anonymous]

So sorry, OP. Honestly there are no words. Just sorry. You and your brother and niece are in my prayers.

[Anonymous]

I’m so terribly sorry. May her memory be a blessing.

[Anonymous]

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.

[Anonymous]

So sorry op.

[Anonymous]

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.

I’m so so sorry.