A Big Honor…

Last night our local Relay for Life dedicated the Luminary Ceremony to Madeline.  It was lovely, calm, beautiful, moving and perfect.  So many people in a dark field lit only with luminaries… lit only with the ones who have survived cancer, are still fighting cancer and the ones we have lost to cancer.  It was such a memorable experience, I will never forget.  The people, the music and the atmosphere were so… I don’t know… comforting and they surrounded us.

It was an amazing opportunity to share Madeline with so many people… to show them her light and kind energy.  She will now live in the hearts of so many more people, and hopefully impact their tomorrows.  I hope they think of Madeline and take more time for their family and enjoy ‘best days ever’ and just live more.  I hope they support all the different ways to change cancer and diseases and people in need… I think they will.  They were that kind of person… they were a big pile of the good ones.  I hope they walked and walked last night and know that they can change things…

I was asked to speak and share Madeline and our life and mission… this is the speech (though I messed it up some but I think everyone knows her better)…

Cancer.  Cancer changes lives.  It changed, forever, the course of my life and it has changed all of yours in some way.

Good evening everyone, thank you for this opportunity to share, remember and celebrate many lives altered by cancers.  I am Erin Musto, Madeline, Amelia and Lucy’s mom, and Matthew’s wife.  I am changed.  We are changed.  Our future- completely not how I planned when I started this journey of marriage and parenthood…

In February 2012 my daughter Madeline was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brainstem tumor… that would take her life 5 days later.  Her battle with cancer was very short.  She only ‘kind of’ got to know her cancer… her cancer quickly took her lovely, functioning and living cells and ended her life in a very short time.

Madeline was by nature a very kind compassionate, silly, simple and mature 5 ½ year old… with 70 more happy years to fill. Cancer took 70 or more of her years.  It did not take her soul, her spirit, her simple happy- or even her dimple and her smile.  It stole her future.

Our family has worked hard to find a way to share Madeline, and in a way give her back some of those years.  Though her living journey is done, her journey is not.  We started Maddie’s Mark Foundation to help families going through worst case scenario- living with a sick child, experience Best Days Ever… to help them enjoy their time and live when they are working through the hard.  Madeline lived in a joyful and simple way, she reminded us all of the importance of fun, unplanned and easy times after a little Musto family dinner- announcing to Matt and I “BEST DAY EVER”.  We also work hard to create spaces and environment for families on a regular basis to enjoy ‘best days ever’… playgrounds, nature walks and simple, safe and fun places that Madeline and her sisters loved.

We are all here tonight to change cancer.  To create awareness, raise funds, support those who are fighting, celebrate those who won and remember those who cancer took from us.  We are here to seek change- we are all different than we were before cancer touched us- most likely we are better stronger people… those are all God and the human spirit… those are not cancer.

Tonight we are here to remind the world to change.  To show that that those children and people deserve those valuable years lost.  We are working hard tonight for all cancers.  Remember to go out and support all of the cancer changers- help support fundraisers, share stories, give blood… do what you can.

In my heart I know that Pediatric Cancer needs more support- so please join us in going GOLD in September.  Share Maddie on your journey and honor her by living your life full of ‘best days ever’.

Please feel free to come see our table, check out what Maddie’s Mark has done and can do… share your story and come see my lovely, I love to show her off… also drink lots of water and walk, walk, walk.  I am so blessed and proud to be here tonight.

Thank you all…

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