Someone HAS to be first…

Is it really rare?  The past 5 years I have spoken and discussed DIPG with so many.  I have written and spoken the same words over and over.

“In February 2012 Madeline, my 5 ½ year old daughter, was diagnosed with DIPG.  Diffuse Intrinsic Pontine Glioma is a very rare and inoperable brainstem tumor.  This tumor steals basic functions from children and is basically untreatable.  I was told my daughter had weeks or hopefully months to live.”

Maddie

I keep wondering if DIPG is actually rare.  It isn’t rare.  I can’t keep saying that word when I share.  Rare leaves the impression that there are very few children and families faced with this journey.  Rare doesn’t help you understand that it can happen to you, your daughter’s best friend, your son’s teammate, your niece, your student… your friend’s son.  DIPG is a roulette wheel, where it lands no one knows.

We woke up on February 2, 2012 having no idea what DIPG is.  We could have never imagined what a beast this cancer is.  Imagine a doctor telling you your child would ultimately die in less than a year, that there is very little treatment and she will lose the ability to do things she loves and KNOW that they are missing.  Swallow tests, breathing clicks, steroids, vertigo, radiation… hope for a small window of well so she could enjoy her time.  DIPG is a beast.

In 2012 with the donations of tumors from amazing families who lost their lovely, researchers were finally able to ‘see’ this tumor.  In those 5 years of work and research not so much has changed.  They are many steps, not quite leaps, from what they knew only 5 years ago.  I keep hoping that they’ll find it, that I will get to see a child survive this.  Someone has to be first…

This past summer, on a rainy and cloudy day, we celebrated my friend Dana’s 40th birthday at the Saratoga Track.  I remember dancing in puddles, drinking margaritas, acting like I cared which horse won and chatting with one of Dana’s old friends.  We talked for a long time about our journeys… she talked about the loss of her mom, I about Madeline.  She saw all the pain, she felt all the missing… and she still looked broken from that loss.  I talked about Madeline and all the parts of this journey that got me to that day.  I tend to keep my broken a little hidden and use humor to diffuse the pain in these conversations.  If I don’t I can’t always let myself enjoy events.  We talked and then turned on different talk… kids, life and horses.  Christine had her 4 boys and I had my 3 girls… albeit one is an angel.  Even in all of the rain we had a great day, I looked forward to our paths crossing again someday.

That was then, this is now.  Christine is now a momma to a little man with DIPG.  She stood with me that day and I am sure told herself she would not know what to do, how to live if this happened to her family.  She looked ahead to the future- proms, vacations, graduations… life beyond.  She has now joined this club that I wish never existed- DIPG Family.  Her youngest son, Devin, was diagnosed 3 weeks ago, after a fall while snowboarding.  Devin is a 6-year-old fighter, a 6-year-old DIPG kid with a journey that no one can prepare for.  Life beyond looks very different now…

She has joined the parents who have to do the unimaginable… working around the clock to find new research, clinical trials.  Parents who weigh living today and getting more tomorrows… with effects of radiation, travelling and steroids.  The roulette wheel stopped on their spot… and time is running out.

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Someone has to be first.  Why not Devin?  Things have changed since 2012… can it change more?  DIPG isn’t like other childhood cancers.  Something BIG needs to change… we need to talk about this, fund research… we need to see better.  Devin might be first…

You are aware.  You and yours are on the roulette wheel.  DIPG is not rare… it is untreatable and fatal.  DIPG tumors grow around the Pons of children’s brainstem, the oldest part of our brain.  It takes away the living- running, walking, laughing… it then steals children’s smiles and words and eventually breath.  DIPG took Madeline’s last breaths, her giggle, her song, her heartbeat… I remember laying with her, how cold her hands were.  I don’t want Christine and her boys to see and know this part… someone HAS to be first…

Why Not Devin?

How can you help… share, talk, donate, spread awareness and support his family.  We might be just so close, let’s try to help Devin be first <3…

Share.  Share.  Share.

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5 thoughts on “Someone HAS to be first…

  1. I remember when your daughter died. It was 9 days after my daughter Sophie died of a glioblastoma. I too am a mother of 3 girls with my baby being in heaven and know exactly what you mean about finding your new normal. I also remember getting chills seeing where the services were for your daughter. I believe they were at St Madeline Sophie Church. I’m certain she and Sophie became fast friends.

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  2. Thank you for writing and sharing with us these Poignant words that I became aware of thru my sister in law Mary Grace – Christine is our Beautiful Loving Niece. Those boys really ARE acceptionally good kids and a reflection of her Great Mothering. Thank you and God Bless. Aunt Nicki OX ❤👵🏻

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