DIPG/DIPT Discussion

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Just One More Day for Love, Hope & a Cure

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

Sunday, February 7, 2010

Survey of DIPG Parents

We are reaching out to all parents of children who have been diagnosed with DIPG to seek information regarding each family's experience after the DIPG diagnosis.

We have been asked to gather information from families for consideration by clinicians and researchers who are focused on DIPG. To that end, we've prepared a survey which seeks information regarding individual experiences, thoughts and feelings, as well as suggestions for changes and improvements. The input of parents who have traveled the path will be invaluable help to those who, unfortunately, will certainly come behind us. (Both parents of a child who has been diagnosed with DIPG are encouraged to complete the survey -- each parent is certain to have a different perspective, even with regard to experiences with the same child.)

The survey results will be compiled in a report which will be shared at the end of February. The hope is that this will assist the medical community in better meeting the needs of children and families. (We also plan to make the information available to the DIPG community as a whole.)

We know the DIPG journey is difficult, no matter where you are on the path. Please accept our apologies if you are reading this at a particularly painful or difficult time. We would never want to hurt you or cause you additional pain, and you should feel no pressure or obligation to participate in this project.

Because we are on a short time frame, there is also a short time for completing this survey. Please note that the survey will close at midnight on February 14, 2010. We sincerely hope you will be able to find time during the next week to share your thoughts and experiences and we thank you for contemplating participating in this effort.

Please contact us at info@JustOneMoreDay.org if there is anything at all we can do to support you and your family.

Click here to begin the survey.

Again, thank you.