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.

 

A Conversation has Begun

Today Nick’s Fight to be Healed’s teens joined forces with the Leukemia & Lymphoma Society (LLS) to hold a conversation about childhood blood cancers and how it affects our children. Held at The Hilton Garden Inn at Albany Medical Center, over 20 people participated while Dr. Vic Kanwar moderated the topics with compassion and empathy. Colleen Umholtz, RN, Angie Silipigno, Child Life Specialist, and Cortney Hill, Social Worker, all staff from The Melodies Center, shared stories and offered advice to the parents and young adults dealing with cancer.

Sammie Sagnelli, co-VP of Nick’s Round Table, shared how she was diagnosed with cancer at age 9 and now is 7 years in remission. The transition from a normal life, to the new normal of a cancer battle and back to a supposed normal life was very hard, because her perspectives had changed so much. She needed to find a way to make it happen and family helped her tremendously.

Members of Nick’s Round Table were a major support for today’s conference.
L-R: Dante Gallucci, Michael Blond, Stephen Cammarata, Andrew Guzi, Katie Collins, Sammie Sagnelli, Sara Falconer.
Front Row: Nate DeSalvatore & Sofie Brennan

Dante Gallucci, a member of Nick’s Round Table, deals with his continued treatment by giving back. He is currently fundraising to be Man of the Year for LLS and if he wins wants the money raised to support pediatric cancer. Giving back is how he deals with his diagnosis. Look on his Facebook page for upcoming events.

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Mary Walls, center, introduces Sammie Sagnelli and Dante Gallucci

Katie Collins, co-VP, Nate De Salvatore, Sofie Brennan, and Sara Falconer from Nick’s Round Table kept children company while doing arts and crafts, so parents could share their concerns and ask questions. Stephen Cammarata, president of Nick’s Round Table, volunteered at the conference, but also commented how many of his friends didn’t understand what was happening when Nick was ill. Having the support of his friends helped him during Nick’s journey. Andrew Guzi and Michael Blond volunteered today, too and Michael wished that he had known how to help Stephen. By giving back and being a good friend, he and Andrew are making a difference.

Parker Ragone who ended his treatment in January made a bird’s nest. 
Christian Rasmussen, who has 1 1/2 years left in treatment,  made an amazing rollercoaster.

There were so many topics that came up today and everyone felt supported by staff, friends, and other families dealing with the same concerns. Seeing Kassidy Krenzer was absolutely wonderful and there was a sense of family coming together.

Other conversations are sure to follow and I hope that many of you get involved. Special thanks to Mary Walls, Manager of Patient Access, for spearheading this event with Dr. Kanwar, and Nick’s Fight to be Healed is proud to be a part of this support system.

What do you wish that you knew when your child was diagnosed? What topics would you like to have a conversation about? Let me know and I’ll make sure that your words are heard and you are supported.

It takes a community and many foundations to make a difference. Thank you to LLS for helping us with our mission.

And the Winner is . . .

All of us because–
Angie Silipigno is Albany Medical Center’s Employee of the Year for 2014!
Nick’s Fight to be Healed Foundation’s Board of Directors would like to congratulate Angie Silipigno, The Melodies Center’s child life specialist for receiving this wonderful award. Angie was chosen out of 7,000 employees and she was nominated 16 times from us, other foundations, fellow co-workers, doctors, and families of children with cancer. There is no doubt that Angie makes a difference.
Angie with her twin girls celebrating the announcement.

What makes it more amazing is that people are beginning to realize how important her position is in helping children heal. Her title says it all–Child Life Specialist–Angie sees up close and personal what a diagnosis does to the child whether they can understand what is happening to them or too small to know anything besides the fact that getting a needle really hurts. She is one of the first people a family will meet after the oncologist has to deliver the horrible news. Her job focuses on the emotional health of the child battling, the siblings, parents, and extended family. A child’s life has been ripped apart by cancer and Angie’s job is to put their lives back together so they are strong enough to emotionally make it through.
Angie with her husband, Chris, who we can see is very proud of her and supportive.
When Nick was battling cancer, Toshiko Nonaka was the child life specialist. She made such a difference in Nick’s daily visits to the clinic. She not only brought him a bag of goodies that inspired Nick’s Comfort Bags, but she took a vested interest in Nick and how to make him happy while he was struggling. One of Nick’s best moments during his diagnosis was getting to meet Eli Manning and other players for the Giants. I will never forget the joy on his face and his brother, Stephen’s. The child life specialist made that happen.
Karen Patchell and Janine Cammarata with Angie during her celebration. Everyone from Nick’s Fight appreciates her hard work.
The emotional connection to the child life specialist and the obvious difference she makes is why Nick’s Fight financially supports this position that is only funded through donations and grants. But it’s not about the money. It’s about connecting with kids, with their families, emotionally staying strong when you see children suffering horribly. It’s giving of yourself despite the pain you feel at seeing families fall apart, children breaking down, and sometimes losing them. Angie brings sunshine to their lives and she celebrates their victories as well as holds them up when life just doesn’t feel fair.
Nick’s Fight to be Healed is dedicated to reducing stress and helping children heal during their cancer journey. Angie is our closest partner in this quest to help others. We couldn’t ask for a better person in be in this position right now and we thank her for all her hard work and selfless dedication.