To the Editor:

September is Childhood Cancer Awareness Month, a month of gold, hope, and goals to tell the world and change this issue.

It seems crazy that I have only, really and fully, become aware of childhood cancer — the treatments, the life, the fight, and the fear — in recent years.  I lived my life thinking that we really had this childhood cancer thing under control, that it was rare, that very few died, and that the treatments were up to date. 

Fast forward to today and the world I live in now.

Two and a half years ago my happy, confident, and simple five-and-half-year-old daughter, Madeline, had some random symptoms and one day couldn’t walk.  We took her to Albany Medical Center emergency room to find out what it was — low iron, a virus, something like that.

After hours of hard waiting and a long Magnetic Resonance Imaging scan we learned that Madeline had DIPG, Diffuse Intrinsic Pontine Glioma.  She had a very rare, inoperable, and basically untreatable brainstem tumor that would take her life in weeks or months.  She had a death sentence at five-and-a-half years old.  She passed away five days after her diagnosis — five days.

Childhood cancer, as I learned in the months following Madeline’s death, was not, after all, that rare.  It was not researched enough and the treatments are the same as they have been for 30 years. 

Childhood cancer treatments are so hard on a small child’s body, and their future.  I learned then that these amazing, strong, and brave children endure procedures, experiences, surgeries, drugs, radiation, and isolation while trying to get better.  They often times must leave their sisters and brothers behind to travel and receive treatment.  They sit in rooms for days and days, and months, while the world around them keeps moving.  Hopefully their family has an awesome community and family to carry them. Hopefully they are blessed with the best.people.ever. Often times, much is lacking.

The people we have met on this journey and the fights we have seen have changed us.  I am forever aware of the need for a big change.  I could pull in all sorts of statistics and data and fill your brain with really big chunks of information.  That isn’t the thing I want you to carry in this.  I want you to see and hear and carry this awareness and bring it forward.  Don’t stop today and just read and walk on in life, but read and know this needs to change.  There was a time in my life that I was blissfully unaware of this fight and how prevalent and hard it is.  I was a good person. I just hadn’t yet seen and heard and known the stories.  I know them now — bring them with you.

In one week my world was broken.  My family’s story and Madeline’s cancer journey is not the same as anyone else’s.  The day your family hears the words “Your child has cancer” your world is shattered and mortality and pain become a normal.   Fear is almost tangible, even after a “No cancer” or “No evidence of disease” is given.  Imagine every doctor’s appointment, scan, bump, and bruise triggering a heavy and deep fear and knowledge of your child’s mortality.  Sadly, it is almost all luck right now who lives and who fights and who doesn’t get to live.  Treatments aren’t good enough to make this not about luck.  That is a stupid reality for a child, a future person, maybe someone made to be a doctor or leader or to help with the crazy world we live in. 

We cannot maintain our children’s future on luck and relying on outdated treatment that hurts their future — if they are “lucky” enough to be given that treatment.  We cannot continue to be blissfully unaware.  We cannot continue to not know what gold is and how important it is to our future.  We cannot.

There was a day not so long ago that I was blissfully aware and maybe even certain that I would never hear the words “Your child has cancer,” followed by, “there is nothing we can do for this cancer.” We will all be touched, maybe very closely, by a child having cancer and their brave and strong character shining. But it should be our goal to help so that fewer kids have to pull up all of their bravery and all of their strength to fight a fight that is so big and harmful.

Become aware.  Carry this with you.  Support those families. Be their best.people.ever. Go gold and change this.

Erin Musto

President of Maddie’s Mark Foundation

Guilderland