Hope in the Darkest Hour

Cancer is indiscriminate but when you hear of a diagnosis in a child, it seems shocking. Kids are assumed to get normal childhood illnesses like ear infections and tonsillitis. There will never be anything normal about an innocent child with a diagnosis of cancer.

Unfortunately the reality is that it can happen to anyone’s child. I know firsthand. I was a parent who got that phone call. Explaining a brain tumor to an otherwise healthy fifteen year old son was heart wrenching.  Next, finding the treatment that was right for him became an all consuming mission.

Thinking back to our first visit to the Hassenfeld Clinic at NYU Langone Medical Center for children with brain and spinal cord tumors, I remember feeling very traumatized just knowing that we belonged in that waiting room. We were in a new club, one I had never dreamed we would join.

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While waiting for our consultation, we had the opportunity to observe. Cheery staff members were engaged in crafts and games with their equal cheery patients and otherwise cleverly distracting the real purpose for the visit. There was a clown with a comedy routine, passionately intend on creating smiles and laughter where they were none. Then, to top that, complimentary massages were being offered to the parents and patients. To tell the truth, it was like no doctor’s office that we had ever been in and we weren’t quite sure what to make of it. It must have been our “deer in the headlight’s look” because we were soon approached by one of the ringleaders of all the fun, a grandmotherly woman wearing a long apron, reminiscent upon first glance of “Heidi,” my childhood fictional heroine.

It was our first time meeting Maya Manley and we remember distinctly feeling as if we had met an angel.  Now, five years later, I can validate that with certainty having come to know the work she has done on behalf of so many families. Maya was able to understand our situation so compassionately because years ago she was another parent who just like us was told her child had a brain tumor. She gave us hope in our darkest hour.

Our whole perception of life became altered in so many ways. Our heroes became not only the children who bravely face such battles but the neurosurgeons and neuro-oncologists who treat them and people like Maya who are on a relentless crusade to improve the treatment of children with cancer.

Seventeen years ago, Maya Manley and her husband, Edward, started a nonprofit foundation called Making Headway (www.makingheadway.org).  MH’s mission is the care, comfort and cure for families of children diagnosed with brain and spinal cord tumors. They primarily serve families in the New Jersey, New York and surrounding areas and are based out of Chappaqua, NY. Their work has proved revolutionary in so many ways. They have chosen to focus on the entire family of a young patient, knowing when a child is diagnosed, everyone in the family suffers. Making Headway funding provides the massage and Reiki therapist and the clown that were immediately obvious to us on our visit to the clinic. They also fund, free-of-charge to referred patients, the services of four psychologists, three educational consultants, and one psychiatrist, a child life specialist, a rehabilitation technician, a yoga instructor, an athletic wellness coordinator and a music therapist.  Behind the scenes, they fund the impressive work of the new neuro-oncology laboratory at NYU Langone Medical Center and the endowed professorship of the highly regarded Dr. Jeffrey C. Allen, Professor in Pediatric Neuro-Oncology at NYU.

Just as Making Headway has forged new roads in treating entire families of pediatric brain tumor patients, NYU is leading the nation’s medical research under Dr. Allen’s guidance.  He has recently acquired a machine, an Ilumina iScan, that supports rapid and sensitive array based genetic analysis. Through this machine, tumors can be determined at a molecular level and doctors can better predict a patient’s prognosis and treatment.  According to Dr. Allen, “No other center in the United States currently uses this technology to classify brain tumors and NYU is leading this ground-breaking effort in collaboration with the German Cancer Research Center in Heidelberg.”

To help with fundraising efforts, the Manleys prefer the old-fashioned route. All their friends get a personal phone call and a heartfelt appeal. Maya is very hard to resist. Even fellow Chappaqua resident, President Bill Clinton, is not immune to her charms. Hearing an appeal to contribute in a blog is not exactly the same personal touch but I am forever grateful to all those who are compelled to contribute…not just for my son, but for all the children who deserve to know that we are all…indiscriminate of race, gender, or age, just like cancer… doing what we can to help. www.makingheadway.org   Thank you.Hope in the Darkest Hour

 

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Upcoming Events

Thu, April 19, 9:00 AM

The First Presbyterian Church of Sparta, Sparta

FPCS Spring Rummage Sale

Giving Back

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Sat, April 21, 9:00 AM

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Earth Day Cleanup

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Sun, April 22, 1:00 PM

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Veritas Christian Academy presents The Music Man

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Sun, May 6, 7:00 AM

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