Honored Kid

Molly Noelle Worner

Molly Noelle Worner Kid Photo


Harleysville, PA, US


DIPG: Diffuse Intrinsic Pontine Glioma

Date of Diagnosis

July 2016


With Jesus January 5, 2018

Treated At

The Children's Hospital of Philadelphia

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My Story

Molly Noelle is the third of six beautiful children.  She IS spunky, snarky , queen of the one liners, memorable, funny and fun to be around.   She loves Jesus.   She loves books, all kinds, but especially The Chronicles  of Narnia and Harry Potter.  She adores animals.
Molly started showing signs of facial paralysis and a head tilt many weeks prior to diagnosis. Our local librarian who knows us well suggested a trip to the doctor. Truthfully, I thought it was nothing. We ended up at the CHOP ER looking for an MRI, but were sent home with meds for lymes disease and Bell's palsy. Molly went to her scheduled overnight camp with no notion of the beast growing inside her. At this point she was feeling tired and nauseous frequently, but it still did not raise any red flags, at least for me. Her pediatrician insisted on a visit with an experienced neurologist once two more weeks passed with no improvement, but the wait is 6 - 12 months. We miraculously got an appointment thanks to a cancellation that led us to get an MRI at CHOP  in Philly.    The nurse assured us we would wait around an hour and receive a call in the next day or two with the results. An hour later we were called back to meet with the Doctor, with tears in his eyes he said there is a lesion in Molly's brain, on the brain stem in the pons. I've never cried so much! This was July 14, 2016.  Our vacation scheduled for July 16 to Maine was cancelled so Molly could undergo a brain biopsy in the most precarious part of the brain. We did not know how dangerous it was ahead of time. I had not googled nothing. I did not know Dr Storm is one of the few pediatric neurosurgeons worldwide able to biopsy the pons safely. He is only one hour from our home. God is good, gracious and always with us. After surgery came 30 days of radiation , steroids , severe nausea, agitation then seizures. Diffuse intrinsic pontine glioma. The worst possible diagnosis. Worse location. No survivors.
All eight of us were richly blessed with nearly 18 months to make memories and take pictures to capture moments and freeze time.   Thankful  for every moment.  Molly endured three rounds of radiation., all palliative care, care designed to hopefully prolong life but most importantly provide quality of life.  We opted against chemo as none have been shown to do anything.  She was under the care of Hospice for one year. Virtually no one survives  DIPG.  It is ruthless and does not discriminate.   
Taking a peak into the future does not always show what we would like.  Knowing is not always a good thing.  Yet we are so thankful as her diagnosis as it changed so much about how we lived out Molly’s days.  We all made a concerted effort to LIVE with the living and not allow this beast of a disease to take over and sap the joy out of our lives.  We lived fully and made so many memories with Molly and drank in the joy one moment at a time.  There was little time for tears as we went on making the most of each breath.  
Realizing fully the power of prayer and peace that comes from a loving God,  Molly was at complete peace with going home to heaven to be with her savior. She is not afraid of death. Nor are we. There is sadness in this disease. Sadness that cannot be described. Dreams , plans that are shattered. 
It is our prayer that through funding, more passionate doctors with bold ideas can bring those ideas to life so no parent has to hear , there is nothing we can do , please make the most of the days you have. Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

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