#dipg

Drugs Against Alpha-Ketoglutarate May Combat Deadly Childhood Brain Tumor

Experimental drugs designed to reduce the body's natural production of alpha-ketoglutarate slow tumor growth and increase lifespan in mouse models of DIPG.

I’m heartbroken watching this.

This girl’s name was Avery. She was 5. She died of a brain tumor called DIPG.

There needs to be more funding for childhood cancers so parents don’t have to go through this. The mom is so brave explaining what’s happening to her other young children, and she doesn’t break down until they actually take Avery’s little body away.

God, it hurts. No parent should suffer this. No child should suffer this.

This masterlist contains links to stories donated for the 2014 “Stories to Save Lives” Collection.  We have posted links to as many of the submissions as we could find, however please note that some were never published publicly, and others have since been deleted by the authors.  

In 2014 and 2015, the S2SL fundraisers were run by @streetlightlove1, in memory of Caroline Cronk, a 5 year old girl who died of DIPG; a devastating inoperable incurable pediatric brain tumor that occurs in children ages 5-9 and led to the foundation of Hope For Caroline, Inc., a nonprofit foundation to support other DIPG families and to provide hope by funding research for a cure.

In 2016 and 2017, the fundraising continued with MoreS2SL, organised by @sohypothetically.  A new round will be soon be running for 2018, so please check out their tumblr @mores2sl for details of how you can get involved! 

2014

3rd Down - An Interlude by Court81981

Anesthesia by Ro_Nordmann (no link)

A Toast to Victory by ghtlovesthg

All the Right Moves and All the Right Faces by BaronessKika (deleted)

B-Side by thesagaciousowl (deleted)

Breathe Again by hakanaii

Cold Hands, Warm Heart by Sohypothetically

Covet by Misshoneywell (deleted)

Crush by atetheredmind

Even Outtake by Annieoakley1

February 14th, 1933 - (An In Name Only Outtake) by Izzysamson

House of the Rising Sun by SolasVioletta (no link)

It Begins - Finding Home Part 9 by Angylinni

I Kissed A Girl by LBug84 (deleted)

Just the Three of Us by Wollaston (no link)

Keep Quiet (An Eggshells Outtake) by Amelia Day (deleted)

Kissing Booth by Hutchabelle

Make A Wish by Court81981

Make Our Garden Grow by Fairmellarky

Midnight Confessions by Famousfremus

More Than One Night by iLoVeRynMar

Neighbours by Lbug84 (deleted)

Never Have I Ever by everlarkanxiety (no link)

Paint the Blur by Jamiesommers

Paradise Lost by Tomistaccato

Peeta and I by lulubee1234

Poet  by HGRomance

Pretty Peeta (Epilogue) by Kismet4891

Professor Peeta Mellark, PhD by english5672

Raisin Nut Bread by karycautivo

Saturday Prep by Hon B (no link)

Seeing Double by alatariel_gildaen (no link)

Shifting Gears by Pookieh

Surrender to Passion (No More Chaste, Pt3)  by Peetaandherondales

Synchronicity: Return the Favor by Everlark_Pearl

Thaw  by alatariel_gildaen

The Pearl of the Antilles by titania522

The Reconstruction of a Heart by IzzySamson

Tonight We Play by titania522

Under My Skin by Court81981

Until We Meet Again - Part 2 by Famousfremus

Wake Up State - An ATPM Outtake by BaronessKika (deleted)

Waking Reality by Streetlightlove

DIPG Research (Closed Facebook group)

July 2 at 7:18 PM

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So What is DIPG?

Diffuse Intrinsic Pontine Glioma (DIPG) is a brain cancer in children of a median age 5-9 years...

DIPG is classified as a midline glioma under new WHO standards...

~80% with biopsy are found to have a mutation on the H3K27 arm...

DIPG is a mix of mutations, some methylated others not, some wild type, and generally there is a mix of types.

It is and is Diffuse (spread like jelly fish tendrils) and located in the Pons part of the brain stem and is inoperable...

The distribution is equal between girls and boys...

It can happen in one twin and not the other...

It can happen to babies and young adults...

It has not been know to strike in the same family twice...

The average survival rate is ~9.5 months, with radiotherapy and dexamethasone steroid treatments...

With Clinical Trials the limits are being pushed to 2 years plus...

Yet some children are gone in weeks...

Challenges are to get chemotherapeutic drugs across the Blood Brain Barrier (BBB), that specifically target the molecular make up of the tumour cells...

DIPG is still essentially a terminal disease...

It does this by putting pressure on the Pons and Medulla Oblongata by growth and blocking of the 4th ventricle space which increases cranial pressure and additional compression on these structures...

The Pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance... Along with temperature regulation, urination and defecation...

The body gradually loses all function and shuts down over time, there is a 'honeymoon' period for some children after radiotherapy. Where they gain function back for a while and then DIPG reasserts itself in a very aggressive form, bringing back symptoms and eventual death...

Research is moving ahead thanks to DIPG Foundations, Charities, Parent Groups and dedicated scientists around the World that are coming together to fund and research this dreadful disease...

In Australia those diagnosed are ~30 per year, in the USA it is ~300... and population wise DIPG accounts for ~10-15% of all central nervous system in children...

With the advent of Biopsy's and donation of neural tissue, with funding, progress is being slowly made in foundation research to understand and move towards treatments that are effective for our children...

Please donate to your local DIPG Charity...

I’m going to take a break from gossip for a moment to get serious ... and sad. Have you ever heard of DIPG? It stands for  Diffuse Intrinsic Pontine Glioma, which is a brain tumor. This type of brain tumor attacks the brain stem, and usually attacks in children. When a child gets this diagnosis, the cold ugly truth is that his or her parents are essentially told “your child is dying, and there’s not much we can do about it”.  I cannot imagine much worse in this world than a parent being given that news.

I learned about DIPG when a friend’s son was diagnosed with it a little over a year ago. He underwent radiation to extend his life, followed by an experimental treatment that showed promise in the beginning, but was not enough to save him.  He died March 1 of this year. 

Today would have been his 11th birthday. It’s been weighing on me a lot today that this mom who last year had to be told her son was dying and there was nothing that could be done today does not get to race around buying cupcakes and candles to celebrate with her son. Parents deserve hope - and they should get to hug their kids on their birthdays.

We can give parents hope when told their kids have cancer if we devote more to researching pediatric cancers. The drugs that prove effective against cancer are so strong that we can’t just translate what is done for adults into kids.  Currently, 4% of cancer research dollars go to pediatric cancers in general.  I opened this by asking if you’d ever heard of DIPG because right now, 0% of cancer research dollars go towards DIPG research.  We owe parents of these kids more - and we really owe the kids themselves more.

So I’m remembering my friend’s son today be spreading the word. If you didn’t know about DIPG before, hopefully the next time you hear about it you’ll know a little more about what it is. If you have a chance to advocate for increased funding for research of pediatric cancers, please do. If you want to put money towards it yourself, St Judes does wonderful work for families facing pediatric cancer, and does research for DIPG.  The ChadTough Foundation and the Michael Mosier DIPG foundation are also two charities started by families who lost children to DIPG. Both raise money for research and for supporting families whose children are going through treatment now trying to extend their lives.

Hey guys. Some of you may know me, I realize many of you do not. *shrugs* that’s ok. The reason why I’m posting today is... another round of more is coming up. I know that many of us are working hard to get our words and ideas together before august 10th. Good luck everyone!!

I thought I would take a moment to tell you why I wanted to be a part of this. Childhood cancer. Those words should make you feel many things, mostly sad and mad. A dear friend of mine, Ivy is a childhood cancer survivor. She is full of spunk, and love and craziness. I’m so glad that she’s here. 

She didn’t have DIPG. If she did, she wouldn't be alive. 

See, those kids don’t live. They usually only live 9 to 12 months after being diagnosed. And did you know that since January, 100 kids who were fighting the DIPG fight are now dead? 

What is DIPG? Diffuse Intrinsic Pontine Glioma, is a cancerous pediatric brain tumor located in the middle of the brainstem, the pons. It is inoperable due to its location and the way it intertwines with healthy tissue. This area of the brain controls vital abilities such as heart rate, breathing, swallowing, walking, eye sight and movement, balance, and so much more. DIPG steals the child's physical abilities while leaving the mind completely intact and the child fully aware. DIPG is considered terminal upon diagnosis and has a 0% chance of survival. Currently DIPG means your child WILL die. This is real, this is hell, this must change.