DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Wednesday, February 17, 2010

Finding Hope--Are There Survivors?

Update- since 2010 when this was published there have been several children who have passed away; however several children are still doing quite well.   Starting April 2013 there will be a series of posts on survivors.   You can also search the blog with the keyword "survivor".

Parents new to DIPG often ask, "Are there survivors?"

The children below--though treated very differently--have one thing in common; they have beaten the odds. Their stories provide hope for families who come after them.

Annabelle-dx 9/2005

Benny-dx 1/2008

Bridget-dx 8/2006

Clay-dx 12/2007

Connor-dx 9/2003

Cooper-dx 8/2007

Dasia-dx 3/2005

Dylan-dx 1/2004

Emily-dx 1/2007

Erica-dx 4/2005

JohnRobert-dx 4/2007

Kayla-dx 8/2006

Kayla-dx 8/2005

Laurel-dx 9/1999
Well 1/2010

Nikki-dx 1998

Nina Rose-dx 3/2006

Quinn-dx 5/2007
Well 2/2010

Ross-dx 10/2001
Well 1/2010

Sam-dx 9/2000
Well 1/2010

Tori-dx 8/1998


  1. So awesome to see this! I know it probably gives much needed hope to many families!

  2. We were all told that DPG has survivors, DIPG does not, and for those who have survived, were misdiagnosed. DIPG can ONLY be diagnosed through a biopsy of the tumor.

    1. Since a DIPG diagnosis is currently based on imaging- that it is diffuse, intrinsic and pontine then it is hard to call it a misdiagnosis. Perhaps it is better to say DIPG is a misnomer and should be called a DIPT- diffuse intrinsic pontine tumor. It looks like there a potential movement toward this given a recent publication out of Denver-

      It is true that one can only diagnosis a glioma by biopsy but that is the way these tumors are classified currently medically- even though some might be PNETs. I'm not convinced for survival that this makes a difference as pontine PNETs are considered fatal as well. So far it seems likely that it is the low grade gliomas that fare better- but these are still gliomas so would still be DIPGs- perhaps eventually being known as low grade DIPGs.

      I don't know a difference between DPG and DIPG unless one is considering DPGs to be a synonym for atypical DIPGs (such as having focal or exophytic components). There is truly a crisis regarding terminology that has to be worked out so everyone is using the same words to refer to the same things.

  3. This Gives gives hope !!!

  4. I don't want to dash anyones hopes-but there is a marked survival difference between typical DIPG vs atypical DIPG patients.

    The latter have a marked improved survival rate.

    Is it possible to know how many of these were typical vs atypical DIPG pts?

    1. You are right that atypicals and typicals are different. Here are two other posts that might be helpful-


      I believe 1 of those listed is typical. Hopefully we will have a better understanding of DIPGs with significant participation in the DIPG Registry. There is a specific research project looking at prolonged survival.

  5. it's too late for us to save our Franco, but I hope they do find a cure for this terrible disease. No child deserves to suffer like they do with DIPG. May God Bless all of them!

  6. Here is a new Clinical Trial that has been recently approved.


  7. Can you please update this...as many of the children listed have been healed in heaven.

    1. Check out this post which has a link to a site with a more updated list.

  8. Not trying to squash hope by any means but can you please update this list? Many of these kids are healed...in Heaven.

  9. This page needs to be updated.

  10. You may wish to update this list. 5 of the children who are listed as survivors have subsequently passed away.

    and the second Kayla

    Depressingly I read the following quote from a recent article:

    It kills 90 per cent of its patients within two years, most within 12 months. The other 10 per cent, doctors think, were likely misdiagnosed.


    I wish we had been told that truth, living with a faint hope is a form of hell.

  11. This list isn't accurate.
    I've just read through most of the stories and, sadly there are quite a few children on this list who have passed away :(

    1. This list was accurate in 2010 when it was first placed. One needs to understand that prolonged survival does not mean cure- it is those that have beaten the odds. Links from the following post might be helpful-

  12. This makes me feel so much better! You can do this too Henry!

  13. I was given 2-3 months for my son...and we were told 9 out 10 children pass from this disease......this actually gave me hope because prior to hearing this we thought that was it. I looked into complementary treatments for my son...essiac tincture,wholefood multi vitamins,kinesiology,prayers etc etc. Not only did he get through 6 weeks radiotherapy,but he had 13 months chemo as well...with no infections,illness or hair loss. He has never missed a days school through all of this and he is nearly 3 years post diagnosis. I hope more people come to realize that there are MANY natural remedies to curing cancer....more emphasis needs to be given to looking holistically at why the cancer is present,not just treat it with chemicals.

    1. To Annonymous of march 30th 2013, please give us more details like who helped you in medical field and where you live in general. We need hope! we just recived same diagnosis and want to do any and everything so our 5 year old has a fighting chance.

      thank you. And i hope your little one is doing well.