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.

Monday, March 25, 2013

Stella- A Shooting Star

It is a story of epic proportions- one that will make you smile and surely make you cry.

Set in a loving home in Canada, a bubbly, red-haired tot lives life as  a terrible monster sucks it away with relentless cruelty.  Those who love her can do nothing to stop it.  Each day is approached with a determination to put a lifetime into as much time as given.

As with all stories,  there are decisions points.... crises.   The very first is whether to treat a fatal disease or not.   In this case, the decision was not to treat the tumor but to live life.   Shockingly, little Stella way outlived her predicted three months by more than a year.    It is a marathon of heartbreak where every few weeks one has to adjust to what more has been lost- impossible to comprehend how much more could possible be taken.  Yet it does.

And there is a climatic finish that will bring many to their knees.    A mother carries her dead child past a line of candles holding vigils witnessing one final gift- taking her child to the hospital to donate  the extremely rare gift to research of a deadly tumor untouched by radiation.   The hope that one day we can stop this evil in it's tracks.

This is the story of DIPG.

This is much more a story of a remarkable family struggling through the unimaginable.

As often is the case, a picture is worth a thousand words.   A video conveys things that words can not- the tears, the fears, the most beautiful child.   Please watch A Year with Stella.

There is also a 3 part article series that tells more-

Thanks to the Toronto Star, Catherine Porter,  Aimee Bruner and Mishi Methven for telling the awful truth of DIPG while sharing this precious child, Stella, with the world.

1 comment:

  1. I read all three sections of Stella's story today and am so grateful. My beautiful 3 year old granddaughter was diagnosed with DIPG on Feb 21. Her parents have chosen not to treat with radiation and I am so glad to read about Stella as it validates the choice made. Thank you