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.

Thursday, April 25, 2013

Maddie's Mark

Just five days.... that is all they got between leaving the hospital after first hearing DIPG until their girl was gone.

Just five years....to live a lifetime.

Maddie had the memory of an elephant.  She had a winning smile.  She was "fiercely independent".  She was a kindergartener.   She was the big sister to two younger sisters.   She loved arts and crafts.   She also had DIPG.

The little girl diagnosed last year on February 3rd in Albany was supposed to go on a Wish Trip to Disney.   She never made it there.   She did get to go to Kindergarten and make her First Communion.   Those final "best days ever" were spent at a dream house in Lake Placid surrounded by family.  When they arrived home, it was too much of a struggle to go back and forth to the hospital so the oncologist came to them.  She died on February 8th.

At one point when she was struggling her dad asked her how she was doing.  Her said reply, "I can't do the things I want to do."  Those were her last words to him- a truly heartbreaking part many have on the DIPG journey.

The community had raised funds to help with expenses but after Maddie died money was left over.   The Mustos family decided to start a foundation- Maddie's Mark Foundation.   The purpose of this foundation was to allow kids in New York  to do things they wanted to do and have a "best day ever".

Here are some examples of Best Days Ever":

  • Naomi , a 6 year old with Ewing's sarcoma, was able to go to a Phillies game- in VIP style.
  • Devon, a boy with an eye tumor, was able to go camping at Old Forge and Enchanged Water Safari.
  • Myles, a 9 year old boy with pontine gliomas,  "best day ever" included a reptile adventure party with a "pile of friends" which included his favorite pizza and cupcakes and a video camera.   They also provided him with a recliner to be more comfortable.   He died a week later in his comfy chair surrounded by family.
  • Devon, also with DIPG,wanted a day having fun with friends and family.  Maddie's Mark set up a dinner .  Superhero Devon pins were made for this special day.

Another thing Maddie's Mark does is make stuffed animal elephants- fitting for a girl who had a memory like an elephant.  Proceeds go to support the foundations.

This is another wonderful foundation started by a family wounded and grieving from DIPG.

Maddie's Mark

Maddie's whole purpose 'was to care'

Madeline Musto's memory helping children have 'best days ever'