DIPG makes Super Heroes

Once upon a time I lived the world so many do, a world where pediatric cancer is healable and treatable.  Children smiled in pictures with no hair, and what I understood if very few died.  So untrue…

February 3, 2012 I became a cancer mom, beyond that I became a DIPG mom.  I entered the childhood cancer world with the worst case scenario- a diagnosis of an inoperable brainstem tumor with a terminal diagnosis.  We were actually told that Madeline would take her last breathe, smile her last smile and give me her last Eskimo kiss in the next weeks or months.  For us though… she left only 5 days later.

Childhood Cancer is not what I thought it was before February 3, 2012… it is not always treatable or curable.  Children experience extremely painful surgeries and procedures.  They receive chemotherapies that are dosed at adult strength- some haven’t been changed or improved in 30 years.  The treatments they receive, if they are lucky enough to make it to adulthood, will cause so many detrimental issues.  It isn’t just lovely kids getting better, smiling with a bald head.  It is much, much worse…

This weekend we travelled to Baltimore to visit my baby sister, Molly.  I remember seeing a 6k last year for a foundation that supports DIPG research.  I put it in my brain that next year, if we could, we would go and run as fast as a cheetah- only I hurt my ankle and put on weight so there was no cheetah in me.  We made it.  The Michael Mosier Defeat DIPG Foundation hosted a 6k Superhero event.  Last night they also hosted a dinner in Bethesda for the families impacted by DIPG, a way to meet one another before the morning.  We travelled over to Bethesda and enjoyed a great dinner with so many that have experienced their own battle with the monster DIPG. 

Social media creates a place where we can connect, we can support.  In recent years’ families have a space to share their journey during and after, in that we have all become connected.  We connect, converse, share pictures and those families are on my mind.  We get to feel like we really know one another.  Jenny Mosier gifted us a chance to really meet and put a human to the relationship we had been building in social media.  It was a great night.  I was proud to have my girls along and my Mr. Rick… Madeline’s aunt and uncle even got to meet and connect.  I love the gift of connections…

We ate and laughed, in the moments we connected and conversed about our lovelies in heaven the energy changed.  We all know the feelings, we all know the missing.  We could talk about how our child presented, the life some had in the ‘honeymoon’ period and sometimes about where our children are buried.  We all know the missing… the hole inside our heart and soul and future that will never be full again. 

This morning we got up, albeit later than we meant to, and trekked back to Bethesda.  We donned our Team Maddie’s Mark gear and walked up to the podium to see and hear the welcome and reading of the Super Heroes.  We met up with Lola’s Family, from out ‘Lola’s Heaven’ Best Day Ever.  Lola was today’s Honored child fighting DIPG, she is a superhero.  She is a light.  We caught up and then we took our place at the back of the line, for slow people and strollers.  My sister and brother in law ran the race so it was just us back there.  I was lucky and grateful that Gabriella’s mom, Ellyn, was ready to walk at the back too.  I have watched her journey and advocacy for years now.  I first learned of her daughter Gabriella Miller in the Truth 365 video way back when.  She, at only 10 years old, was amass in knowledge and was bold beyond her years.  She told the person taping her video when asked what politicians need to know- “Talk is Bullshit, we need action”.  Her infectious giggle followed her answer, bringing her back to the 10-year-old part of her.  She was so right, still is.  I loved getting to walk with Ellyn and talk about our girls, their journeys and the fact that is sucks that we met this way.  I don’t think she knows how I admire her…

We finished last, but really I just went for a walk with pretty amazing moms.  I so enjoyed it…

A part of my heart was so glad and felt joy connecting, I felt the energy in that run.  It is the kind that sustains us and keeps us in that moment.  I never get to feel the hard of those moments in them.  I just stay right there in the energy.  I can feel it later.  I can sit back and think and feel it out.  Now I sit…

I revel in the energy of so many coming together, but hate that we all know the story.  The fact that there were so many there reminds us that there are so many impacted with DIPG and loss.  The joy of the energy of those people and runners is laced with the pain of loss and brokenness.  In that loss, I know that God works in the connections, in the building of the brokenness and the caring for the hurt.  I know this.  Today was one of those… amazing and beautiful laced with pain and loss.

I see change.  I see new ideas and research and trials in these years.  I see so much change since 2012 but not enough.  I want there to be a day that the energy of the Foundation built to defeat DIPG has no need, has no more extra energy. 

It is so hard to think that just today I walked with a mom who will ultimately say goodbye to her daughter, and let her go home to Jesus.  I saw a lovely who ran and smiled and laughed but will join God in a time far sooner than we all know she should.  I hate that part.  I love the connection and hate the hurt we all feel, the fight we all battle.  Life… is amazing laced with hard.  It is what it is…

After a 6k and a busy weekend with my sister, Mr. Rick, Uncle Nathan and my girls we are snuggled… enjoying some simple time.  I think we might even squeeze a little Beauty and the Beast in…

Tomorrow we travel and get back to normal- grateful for the experiences and the time together, grateful for the connections, conversations and moments we all shared.  Until next time you DIPG families… I see DIPG research achieving a level that HOPE is word we can use when we talk about it…

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