Shen Goes Gold

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L-R: Ron Agostinoni, Sarah Olsen, Kaitlyn Gilbert, Brittney Decker, Don Flynt, Amanda Hayes, Janine Cammarata

Today many at the Shenendehowa Central High School wore gold for September’s Childhood Cancer Awareness Month. Gold ribbons were handed to hundreds of students and Brittney Decker, president of Nick’s Round Table, spoke about the importance of raising awareness and the purpose of the garden.

Don Flynt, who was the principal at High School East for 20 years retired last year, and I had the pleasure to meet the new principal, Ron Agostinoni. The first thing Mr. A (as the students call him) mentioned to me is that he knew one of the kids whose picture surrounded the garden–Emily. He is good friends with her family and felt an instant connection to our cause.

He then said that he and Mr. Flynt met a couple times over the summer to help with the transition. He figured Mr. Flynt would start with all it took to run a school. However, one of the first topics mentioned was Nick’s Round Table, the importance of the Memorial Garden, and our mission to help kids fight cancer.

 

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Don Flynt honored because of his commitment to his students.

Today, in addition to raising awareness for kids battling cancer, we dedicated a stone labeled with the word ‘commitment’ to Don Flynt. He recognized that in the midst of tragedy, our young adults needed a way to take action. He provided the space, tools, and platform for them to be empowered to help others.

Don Flynt has always shown compassion and integrity, and I believe Mr. A has the same qualities. We look forward to working with him.

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For all of our children who are in the midst of their cancer battle, we are right beside you. For those who have beaten this disease, we are ecstatic for you. For our children who have gone before us, we will never forget you and keep fighting in your name.

September is Childhood Cancer awareness month, but every day our kids struggle with this disease. Make a difference today.

Chased Away Leukemia

 

 

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Janine and Chase at the Ride to be Healed Motorcycle Fundraiser

If ever someone would be called a miracle baby, Chase would be it. Today is Chase’s 6th birthday! Happy Birthday, Chase! But he had been fighting cancer since he was 1. For his whole life, cancer is what Chase has known. He has been on the brink of losing his battle to moments of reprieve, only to be thrown back head first into the foray.

That type of rollercoaster ride would throw any family into overdrive and drop them into exhaustion. It takes a team to make the right decisions on treatment, takes faith to hope you made the right decision, and takes a community to hold you up when those decisions don’t go as planned.

The hardest part of being a parent with a child fighting cancer is the second guessing. Decision-making plays with your mind as does the exhaustion from sleeping in the hospital with your child or having to still work when you are worried out of your mind. It doesn’t matter if it’s the child’s other parent there. As a mom, I needed to be with Nick to make sure that nothing went wrong.

But despite our best efforts, things can go wrong. Chase had so many side effects from his transplant, and chemo. This poor child suffered without really knowing why he was suffering. It was what he thought life was like. That is the horrible part of cancer. These medicines that should help tend to hurt more than the cancer.

Through the power of faith, family, commitment, determination, and community, Chase pulled through. Now he is a little boy who fights with his sister, knows how to smile to get an extra treat, and enjoys running around. So many people and foundations helped his family get through, but his family was the backbone.

Chase, I hope you enjoy your birthday and have an extra piece of cake for me–tell your mom I said so! Love you and your family!

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Peyton, one of Chase’s siblings he gets to harass! I see those bunny ears!

Building a Compassionate Generation

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Brandon & Paige Farinaccio

Last night Luke and I attended the wedding of one of the young ladies who grew up with Nick and Stephen. Paige was a few years older, but her younger brother, Jason, went to preschool with Nick, and they all practiced karate together.

Paige is the first of our kids to get married. It’s weird seeing the young adults beginning their adult lives, and there were a few times last night when despite all the happiness, I thought of Nick and all he was missing.

Stephen couldn’t go, but at least it was because he was at school. He was doing something productive. I miss my boys in different ways.

Instead of giving favors, Paige and Brandon wanted to make a donation to Nick’s Fight to be Healed in memory of Nick. Leave it to this amazing couple to think of my boy. We were honored and touched.

It was extra special, since their gesture started on the first day of  September being Childhood Cancer Awareness month. As we remember our children who are no longer with us and continually fight alongside the braves ones battling, it’s important to acknowledge this generation of compassionate philanthropists, who take any opportunity to make a difference.

Paige and Brandon are just beginning their lives together. Yet they took the time to embrace what was a devastating part of all our lives, and they infused it with love and hope. They and all the young adults who celebrated with them are our future. They are the ones who will continue to give back. We set the example, but they took action.

Nick would have been dancing up a storm at the wedding last night with Stephen right there with him. Cancer took that away from us and that is why we all have to take action.

Paige and Brandon, we wish you love, happiness, and good health for you both and your children to come. May you continue to make the world a better place and thank you for thinking of others when it was your special night.

Flow to be Healed Yoga Program

Announcing Nick’s Fight to be Healed Foundation’s new Flow to be Healed Yoga program at The Bernard & Millie Duker’s Children’s Hospital in The Melodies Center!

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One of our biggest missions is how to reduce stress for the entire family when a child is diagnosed with cancer. We have focused on helping with financial needs and emergency items for initial diagnosis, and anything that will distract, comfort, and keep a child connected to those they love. It’s healing, effective, amazing work.

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Karen Patchell, creator of Flow to be Healed yoga program at The Melodies Center doing a pose with Bella Caruso, while she is receiving chemotherapy.

But when you can teach a child that everything they need to fight stress, fear, pain, and frustration is within, then you empower them to be the captain of their own vessel. They have an internal tool that they can literally use anywhere! Bella loves the games and the stretching. She even showed her mom some of the poses when she got home!

Karen has been a part of Nick’s Fight to be Healed Foundation since its inception. A second mom to Nick and Stephen, she has dedicated much of her life to helping kids with cancer. When Karen decided to become a Registered Yoga Teacher (RYT) for children, she found her calling. She slowly brought yoga into The Melodies Center with fun games like blowing up a balloon to teach about breath or sharing books on yoga that featured different animals and how they represent yoga poses.

This was positively received by the staff at the clinic, and the program began on Friday February 17, 2017.

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Not only is the dragon on the mat a symbol of our foundation, but it is a focus point. Focusing on an object or stationary point is calming, because it stills the body and brain and helps maintain balance in standing poses. It also allows the children to move their bodies in a safe way instead of looking around at distractions.

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Karen standing in tree pose with Amelia and Bella.

Amelia pictured in purple was one of Karen’s first students and was thrilled to be there for the first gathering. Her mom says, “She LOVED it and I think it is great….it’s something relaxing for the kids to do but fun as well.”

Not only is yoga fun, but it helps the children deal with the uncertainty and pain that can come with cancer treatment. Karen teaches a type of breathing called Lion’s Breath where you inhale, then open your mouth, stick out your tongue, and breathe out with a roar. Concentrating on breath, takes their mind off of the anxiety or discomfort of getting their port accessed, for example. The action gives them control in a situation where they don’t have much at all.

Rob Saba, Director of Development, Grateful Patients and Families at Albany Medical Center, happened to be giving a tour when he came upon the yogis practicing. Rob shared how this program provides not only much needed distraction, but socialization and interaction, which helps heal.

 

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Anyone can do yoga. Even a child connected to an IV pole.

A child’s cancer journey can last up to three years and sometimes longer. Angie Silipigno, Child Life Specialist, at The Melodies Center is excited about this program because they are always looking for new and innovative ways for children to improve their experience. Nick’s Fight to be Healed Foundation has always recognized that it takes more than medicine to heal a child.

Angie writes, “As I observed the first session of Flow in clinic last week, I saw wonderful things happening . . . Two young girls socializing with one another, engaging in physical activity despite the presence of tubing and IV poles, the passing of time in a positive way, exploration of their bodies, and above all, lots of laughter.  One of the best parts of this program is that it can be used with any age patient, as well as parents and other caregivers . . . At a time when a patient may be feeling self-conscious about their bodies or their physical abilities, this can be utilized to help them become more aware of their body using breathing, relaxation and stretching to establish an improved level of comfort and empowerment . . . Karen has a warm and welcoming presence. She has such a natural ability to assess a patient’s comfort level within a brief moment and meet them right where they are.”

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That’s the healing power of yoga. Accepting where you are at the present moment and making the most of it. Despite the fact that these children are battling cancer, they can heal through connections, yoga poses, and laughter.

 

The Kindness of Others

On Wednesday, May 9, Nick’s Fight to be Healed Foundation held its 3rd Annual Fight Cancer with Amore fundraiser at the Lark Tavern in Albany. Rob Amore of Amore Clothing sponsors the event, reserves the venue, invites friends and business associates, and gathers raffles to raise money that supports local children fighting cancer. Rob and I went to The College of Saint Rose together, but had lost touch.  Three years ago we reconnected at our sons’ soccer game. 

The hardest part about meeting new people or meeting up with old friends is telling them Nick’s story.  Some people get it without having to go directly through the experience and some can’t wait to get away. Rob got it and has been supporting the foundation ever since.  Now  three years down the road I thought to myself, How do I build awareness and empathy with people who don’t know me, my child, or the foundation?

Well, that night I discovered that opening up to people and establishing an emotional connection is the path to empathy.  I spoke with a man who asked who Nick was.  When I explained that he is my son, his whole face softened. He lost his baby child.  We felt a connection in a crowded restaurant filled with strangers.  He clasped my hand and asked what he could do to help.

Besides the fact that financial support allows the foundation to assist more families with medical costs and other bills, his compassion helped me.  When I miss my son, it’s nice to know that others care and want to lend a helping hand.  The kindness of others nurtures healing and they are no longer considered strangers.

Thank you to all who showed kindess and generosity at this event and throughout the year.

Rob Amore and his wife, Rosella, enjoying the evening at the Lark Tavern.