The Inside Press

Magazines serving the communities of Northern Westchester

Maria Fareri Children’s Hospital

True Beauty at Fundraising Event for Maria Fareri Children’s Hospital

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Cheryl Lynch with the singers from One Voice who preformed at the event. Photo by Susan Balsam

 

Champagne, hors d’oeuvres, flowing gowns and all things beautiful set the scene at the Tamarack Country Club in Greenwich, CT on Saturday November 30th. Every detail was attended to at the highly anticipated 20th annual fundraiser to support the Maria Fareri Children’s Hospital Children’s Cancer Fund (CCF). Beauty was the unofficial theme of the night: dazzling people, décor and music filled the venue.

CCF Fashion Show Photo by Susan Balsam

Cheryl Lynch, owner of Cherylyn Salon in Armonk, is known for providing luxury spa and beauty services. Her salon has won many accolades. As evident in the décor of her business and the quality of aesthetic services she provides, she is truly an expert on what is visually appealing. But Lynch’s concept extends far beyond what the eye can see. Through the passion and dedication of her philanthropic work she personifies what it means to radiate beauty both inside and out.

Over 320 people joined Lynch, and her husband and co-host Jeff, to support the CCF’s dedication to raising awareness for Pediatric Cancer and Blood Diseases. Funds raised went to support patients and their families and research programs at Maria Fareri Children’s Hospital, located in Valhalla and a member of the Westchester Medical Center Health Network.

Drinks flowed throughout the cocktail hour as guests casually mingled. When the doors to the main dining room opened, patrons were delighted by a heartwarming performance by the talented young singers from the music group One Voice. Channel 12 news correspondent Annalisa Klebers emceed the event.

Subdued elegance gave way to an upbeat vibe. The partakers “let their hair down” as a lively fashion show entertained the crowd; clothes were provided by area boutiques. Sequins, taffeta and silk filled the room. The evening was a culmination of style, community and purpose. Every detail was flawlessly planned and executed, including both live and silent auctions and a dessert buffet complete with cookies shaped like dresses and shoes.

Lynch brings the same passion to this cause as she does to her salon. She advises to “never give up…each penny makes a difference and every prayer is appreciated”. Lynch’s actions remind us that true beauty radiates from the inside.

The kindness and generosity of the evening proved to be contagious when Michael Fareri, whose family built the Maria Fareri Children’s Hospital, made a surprise donation of $30,000 which covered the cost of the event’s dinner thereby vastly increasing the funds donated to the CCF.

For more information on CCF of Maria Fareri Children’s Hospital: www.thechildrenscancerfund.org

For more information on Cherylyn Salon: www.cherylynsalon.com

Sabra Staudenmaier resides in Chappaqua and is a frequent contributor to Inside Press publications. 

Community Comes Together to Support Danny McManus, a Wampus Student & Leukemia Patient

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Usually ten-year old Danny McManus, a fifth-grader at Wampus Elementary School, is outside with a ball and lacrosse stick.  Standing 5’4” tall, he towers over most of his friends, and is a tireless force of nature.   This past October, while Danny was competing in the Tri-State 91 Lacrosse tournament, he wasn’t keeping up the way he normally would.  Danny’s parents sensed something was wrong, took him to the pediatrician, and within 24 hours was admitted into the hospital and diagnosed with leukemia–a form of blood cancer.  When I see people in town now, Deidre McManus, Danny’s mother says, “I realize we have changed people by sharing what we are going through.” The subsequent outpouring of support from family and friends, neighbors, doctors, teachers and clergy tells a heartwarming story about the generosity of Armonk’s community.

When Mrs. McManus and her husband Francis were told that they needed to bring Danny to the hospital, they had to find someone to take care of their older son, Colin, who is in 7th grade. Their neighbors Drs. Erik Cohen and Maude Lemercier were already friends, but have become like extended family, giving Colin an extra set of adults to rely on, and helping the McManuses to interpret the constant stream of medical information.

That first night, while Danny was being evaluated in the hospital, Deirdre thought of her lifelong friend, Karen Wolownik, a Nurse Practitioner and Nurse Leader in the Pediatric Blood & Marrow Stem Cell Transplantation Unit of Maria Fareri Children’s Hospital at Westchester Medical Center.  Within a few hours, Karen received an alert from the hospital about Danny. She called Deirdre right away–Karen’s expertise was precisely what they needed. Karen was confident that Danny was in the right place to deal with this horrible disease.

It’s taught us a lot about cancer–how it can affect anyone, even kids… and that even with cancer Danny is still just Danny—my friend.  He has shown us that having a strong growth mind-set helps get you through the things in life. —Shane Gordon, Danny’s friend

Danny’s AML Treatment

The first line of treatment for Danny’s acute myeloid leukemia which is commonly called AML is potent chemotherapy, often followed by a stem cell transplant. The Children and Adolescent Cancer and Blood Disease Center at Maria Fareri Children’s Hospital has become a center of excellence for such therapies. The center was established in 2011 when Westchester Medical Center hired Dr. Mitchell Cairo from Columbia University to lead it. Dr. Cairo is a world renowned specialist in stem cell biology, molecular oncology and experimental immunology and a long-time Armonk resident.

In addition to the expertise provided by Dr. Cairo and his team, the McManuses have been overwhelmed by the competence and compassion of the staff at Maria Fareri Children’s Hospital. “They’ve worked with Danny every step of the way to always make sure he understood what to expect during every procedure.” For example, before Danny had a port connected to deliver chemotherapy, the Child Life Specialist explained the procedure by letting Danny feel the port and see how it would be used with the help of a doll.  Then, during the chemo, Danny needed an NG tube (a nasogastric tube) to deliver nutrition directly to his stomach. The physician working with Dr. Cairo, Jordan Watson, MD, asked one of the residents to demonstrate for Danny what it would be like and, right in front of Danny, inserted a tube down Jordan’s nose and throat! She said, “I’ve always wanted to know what it felt like!”

Community “Shavees” Support Danny

As if that wasn’t enough, last month Dr. Watson asked the McManuses if Danny would be part of her team, raising funds to support the St. Baldrick’s Foundation, which is dedicated to funding research for childhood cancers. Danny’s family and friends created The Mighty McManus Team, Dr. Watson and her fiancée shaved their heads alongside nine of Danny’s friends, and together they raised nearly $30,000.  Danny’s friends, Shane Gordon and Michael Bellantoni, are two of the “shavees.”  Gordon says, “The reason we all shaved our heads was because he really likes his hair, so we thought it would be good if we let ours all grow back together.”  In addition to funding research, the McManus’s relatives created a GoFundMe campaign to lend a hand while Deirdre and Francis take time from work and manage the costs of Danny’s care.

Danny’s friends, before and after shaving their heads at the St. Baldrick’s Fundraising Event

A Turn for the Better

The next step in Danny’s treatment was a stem cell transplant. Statistically, 1 in 4 siblings have markers indicating they are a good match and won’t be rejected by the recipient. In Danny’s case, they were thrilled to discover that his brother, Colin, is a 100% donor match for Danny, making a stem cell transplant an ideal option. On January 4th Colin underwent a 3-hour operation–drawing bone marrow from both hips to obtain stem cells to populate Danny’s bone marrow. Since then, Danny has been improving every day, and although he has no immune system of his own yet, he was able to come home from the hospital after 133 days when they celebrated Danny’s 11th birthday on March 13th.

Danny’s friends paid a visit in honor of his birthday.

The McManuses are touched by the efforts made by every church and synagogue in the community. Melissa Gordon, who attends St. Patrick’s with the McManuses, says that since Danny’s diagnosis, a remarkable number of children and adults have filled the church on First Fridays, when the Church holds special services for adoration and prayer. At school, Danny’s teacher, Mrs. Marchesini, has kept Danny as involved as possible, and in the meantime made t-shirts, videos with messages from his classmates, and a video of the whole class singing Happy Birthday to Danny.

Shane Gordon and Danny look forward to getting on their bikes again and exploring the outdoors.  When I asked Shane how Danny’s illness has affected him and his friends he said, “It’s taught us a lot about cancer–how it can affect anyone, even kids… and that even with cancer Danny is still just Danny–my friend. He has shown us that having a strong growth mind-set helps get you through the things in life”.

(L-R): Deirdre McManus, Dr. Jordan Watson and Karen Wolownik
For those who would like to help, both the Maria Fareri Children’s Hospital and The St. Baldrick’s Foundation accept donations.  In addition, the McManuses recommend registering with BeTheMatch.org to help someone in need of stem cells.

When a person develops leukemia, the body makes more white cells than it needs, crowding out the normal cells and affecting the way major organs work. Eventually, there aren’t enough red blood cells to supply oxygen, enough platelets to clot the blood, or enough normal white blood cells to fight infection.

“Incredible Progress” Two Words about Pediatric Cancer We Love to Hear

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By Jamie Lober

Maria Fareri Children’s Hospital is a special place that has been treating kids in the area for over 30 years.  “If you look back when our division first started, the outcomes for kids with pediatric cancers in general were not as optimistic as they are today,” said Jessica Hochberg, M.D., assistant professor of pediatrics in the hospital’s pediatric hematology/oncology and stem cell transplant division.

Especially in the last 20 years, there has been incredible progress in the doctors’ ability to treat the kids.  “With newer agents and approaches, we are turning the table to curing the majority of pediatric cancers in a way that is not devastating to the rest of their health and they are growing up to be healthy, happy, productive adults with families and careers,” said Hochberg. Kids tolerate therapies well with few exceptions and get back to school and other activities in time, she added.

slide1“The best example is pediatric leukemia because back in the 1950s and 60s that disease was uniformly fatal and there was not much we could do; now, with newer agents and combinations of medicines today, we are curing over 90 percent and we can do it without radiation or high dose chemotherapy,” said Hochberg.

 Little Heroes

The doctors describe these kids as heroes and are glad to offer them a team of assistants in the fight including nurses, social workers and clinical coordinators. Kids come back doing well after they are done with treatments and are sometimes proclaimed as cured.  It is rewarding for the doctors to watch them grow healthy and transition into adults.  Every child tackles a different quest.

“The most common cancers in pediatrics are the leukemias, in particular acute lymphoblastic leukemia, closely followed by various brain tumors for which there is also a lot of progress made in surgical techniques, radiation techniques and chemotherapy combinations,” said Hochberg.

The statistics may alarm you.  “Childhood cancer occurs regularly, randomly and spares no ethic group, socioeconomic class or geographic region,” said Gillian Kocher, public relations director for Alex’s Lemonade Stand Foundation for Childhood Cancer. Families rely on the politicians to keep research funded and on the scientists to continue the good work they are doing. “Worldwide, an estimated 263,000 new cases of cancer affect children under the age of 20 each year,” said Kocher.

It’s a small number of kids who get cancer compared to adults but pediatric oncology centers have been able to collaborate nationally and internationally to find clinical trials and share information, expertise and treatment strategies. “This way we can identify best combinations of treatments and the treatment becomes uniform throughout the country at the different centers,” said Hochberg. Some kids’ tumors are more resistant than others but there has been a big development of supporting research that looks at the specific biology of tumors and determines what made the tumor cell become a cancer cell. It is used to identify new targets and drugs to use.

There is a lot being investigated such as biological differences that can vary even among the same disease patient to patient. With two patients with the same disease and biology, one may do well and another will not.  “There is still a great deal we have to learn about why that is but I always tell families that there was nothing they did to cause it and there is nothing they can do to prevent it,” said Hochberg.

The most dramatic trend is the number of cancer survivors doctors are seeing as they get better treatments.  “An interesting direction the field is going in is how to deal with the later effects of chemotherapy or radiation treatment in childhood as an adult,” said Hochberg. New treatment options tend to have less toxicity on the healthy tissues in the body.  “Exciting developments that we are actively researching and participating in here are looking at cellular and antibody therapies and manipulating the immune system to better fight off the cancer,” she added.

The community is supportive of patients and has done blood drives and fundraising to help with medical costs. They are also interested in the new findings. “There are a lot of cellular treatments where we can take immune cells from the patient or sometimes from a donor and manipulate those to become cancer-fighting cells and give those back to the patient after we have manipulated them in various ways,” said Hochberg. This has been well-tolerated.

The “Take Home” Message

Doctors want the take home message to be that although they realize childhood cancer is scary, they do plan to cure kids.  “We want to be as open as possible while at the same time always giving them hope and reassurance that we will get them through this,” said Hochberg.

Often the fear of what the treatment will be is usually worse than the treatment itself. When patients have a great response to therapies, doctors see relief and fear subsides.

Doctors highlight that pediatric oncology is such a different field today than it used to be. “The biggest misconception is that obviously this is a devastating disease that you would never want your child to go through but I think people need to know that from the time they were kids compared to now it is so different and really is a field full of hope and good much more than the sadness that comes along with it,” said Hochberg.  Families are encouraged to get involved and spread the word about research efforts.

Jamie Lober, President of Talk Health with Jamie, is a nationally known speaker and writer with a passion for providing information on health topics A-Z. She can be reached at talkhealthwithjamie@gmail.com.

Resources for Families

Maria Fareri Children’s Hospital, 
department of pediatric oncology, westchestermedicalcenter.com/mfch

(914) 493-7997

Alex’s Lemonade Stand Foundation alexslemonadestand.org

Leukemia and Lymphoma Society lls.org

(914) 949-0084

American Cancer Society cancer.org

(914) 949-4800