Nick’s Nook–10 Years of Cozy Reading

Nick loved reading. Plain and simple. He enjoyed fantasy, graphic novels, superheroes, stories about dogs, and Warriors Within, my first and only book he would ever read. When we first thought of providing a reading space in Gowana Middle School, it was about remembering Nick and providing a place where his friends and others students could sit, read, and look at his photos and drawings.

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Stephen (on ladder) with best friends, Emily and Andrew.

When his brother, Stephen, friends, and family were invited to paint and prepare the space, it became a place of healing and hope. Losing a child is devastating, life-changing, an irrevocable rip that never heals. As adults we may not have the experience to navigate the way through this, but we can hope that we will muster through. Children who have lost a sibling, relative, or friend who is a peer aren’t ready to face such a loss. They shouldn’t have to, but everyone knows that it happens all the time.

Nick’s Nook became part of the healing process. When you give a kid a brush and tell them to go at it, it can only bring a smile to their face. They have something to do instead of focusing on the pain.

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Knowing the pain that Stephen has dealt with, I would do most anything to get a smile out of him. This picture was taken 10 years ago when losing Nick was raw and unbelievable. His friends, teachers, administration, and community stepped in to lift him up and give us strength when we didn’t have any.

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Nick’s Nook, June 2009

When Nick’s Nook opened up to the middle school students, a reception was held. Nick’s friend read poems, essays, and shared memories. Telling stories heals and reminds us that our stories are important to tell. They are important to read. Every year I venture in, donate more books that Nick would have loved to read, and listen to the librarian as she tells me how popular this section is. It’s soothing and I’m grateful for this space.

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April 2019 — Photo by Jaclyn Geisel

On the same day, I pulled out the photos from 10 years ago, my friend sent me a current photo of Nick’s Nook. My son knows how to send me signs. She let me know how popular it is. This is a place to relax and reduce stress while enjoying a good book. It’s exactly where Nick would have been every chance he could. Seeing this photo brought me so much joy. Not only because the students enjoy it, but because our community continues to remember my beautiful son and how he changed our world.

 

Family Connections

What does a 17-year-old and a 9-year-old have in common? Music–both love hip hop and Ariana Grande; arts and crafts–making Valentine hearts to decorate their rooms; beautiful hats; journaling; laughter.

Their cancer diagnoses may forced them to stay in the hospital, but their gorgeous smiles portray their love of life and need for connection. Whether it’s in the hospital, at a coffee shop, at a YMCA, or someone’s home, Family Connections, an emotional support program through Nick’s Fight to be Healed Foundation, brings families and patients together to share their stories, heal, have fun, and forget about cancer for a while.

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Shade and Angelica spending time together.

That same night the first Family Connections of the year was held at the Pediatric Behavioral Health building at Albany Med. Nick’s Fight works with the social workers and Child Life Specialists at The Melodies Center to make these events happen. Thank you to Mary Beth, Katie, DeeDee, and Meghan for helping to organize this night.

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The entire family is welcome and dinner is always served. It’s one less detail parents have to think about, so they and their children can have an easy and enjoyable night.

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Stories are shared and the rest of the evening is split between learning different journal writing techniques and restorative yoga. The groups split between younger children for more playful yoga and creative journaling, then the adults/young adults practice restorative yoga and equally creative journaling, but with deeper journal prompts.

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Thank you to Sydney Joyce and her Girl Scout Troop #2328 in Clifton Park for donating and writing positive quotes in each journal.

Everyone who attends receives a Nick’s Fight journal or journals that are generously donated by the community.

Our stories are important. Sharing them can be healing, and they can also help someone else going through a similar journey to feel hope and bond with that person. We had three young adults, one who is a long-term survivor from a bone marrow transplant, another who is in the midst of having side effects from hers, and another preparing to go to transplant. Those shared stories had such a positive effect on everyone, and it created a sense of unity and sacred space.

We wrote about what brought us joy, how we could be present right where we are, and personalized the journals to make them ours.

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Mary Beth, the child life specialist, and Shade writing together.
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Kassidy, in front, traveled all the way from college in Utica, to make the event.
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Families that journal together have a great deal of fun!
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Thank you Lynn for sharing the yoga program in Karen’s place.

Being in bed for hours and not having space to move or stretch can cause stress on the body and mind. The Flow to be Healed Yoga Program created by Karen Patchell allows anyone to do yoga no matter where they are in their journey. It’s about creating space on your mat and in your mind to accept what your body can do right in this moment and do it!

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Shade and Alyssa met tonight and formed an immediate bond!

No matter where you are, there is hope. No matter where you are in your cancer journey, there is Family Connections. Any family of The Melodies Center is welcome. For more information, contact Janine or visit our website at www.fighttobehealed.org

If you’d like to donate journals or gift cards for dinner, they can be mailed to NFTBHF, PO Box 217, Rexford, NY 12148 or contact Janine at janinecammarata@fighttobehealed.org

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Jack, a teen volunteer, and Chase have developed a deep friendship through this program.

 

Dance Celebration

Oh what a night! Glen Sanders Mansion was beautifully decorated for Nick’s Fight’s 3rd Annual Dance to be Healed Celebration!

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Angie Silipigno, her girls, and Courtney Hill did an amazing job decorating the tables with red and pink leis, hats lined with hearts, fun eyeglasses, purple beads, with votives and mirrors provided by the staff. Red lights lit up the walls and photos of our families dancing from previous dances lined the room.

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The children and young adults looked beautiful and handsome. The little gals were very excited to get their hair done by Courtney and Jackie of Pixie Salon and makeup done by Ebony Muniz and Autumn Wright, and they twirled in their dresses and fancy shoes. Family photos were taken by Elizabeth Fox Photography. Many memories were made.

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Courtney of Pixie Hair Salon styling Maddie’s hair!
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Jackie of Pixie Hair Salon curling Regan’s hair.

For the third year in a row, Mo Haskins of Cool Cat DJ played music that kept the kids on their toes. Cameron knew every word to each song and danced around the floor interacting with everyone!

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Managed to get Cameron to stand still for a photo!

Ali was adorable! He is Nick’s Warrior for the run this year on September 30! Mark you calendars! His sisters Sara and Asma volunteered with Nick’s Round Table along with many other teen volunteers.

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Savannah and Maya hung out at the kids’ table doing activities.
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Nick’s Round Table Teen volunteers!
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This table was packed all night!

Little Lucas danced all night and learned the sprinkler and mashed potato dance. Abby and Regan were inseparable. I loved seeing Brittney, Kacey, and Kendra–incredible young adults giving back despite their journeys.

I enjoyed talking to all the families and am grateful many were able to come and feel the love of family. For those who couldn’t come, you were missed, but we will see you at upcoming events. When I peered around the room, I saw children at the craft table, others were at the Open Box Photobooth sponsored by Christina Primero. They ate quickly and stayed on the dance floor. Parents, Melodies’ staff, friends, and extended family connecting and supporting one another, enjoyed their time together. This is my favorite event!

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Joe Santoro, Lucas’ dad, and George Sisco, NFTBH Board member, Kendra’s dad are both getting in the spirit!

Thank you to all the generous sponsors: Maddies’ Mark who sponsored all the families, Play it Foreward for the photobooth, Maria, Lucien, and Nancy from Glen Sanders Mansion for doing a beautiful job, Elizabeth Fox Photography, and Out of the Box Photobooth.

 

3rd Annual Dance to be Healed

All it takes is one moment in time when someone opens their heart and gives all they have. The connection between a nurse and their patient can be life-long for a child battling cancer. That nurse is the safety rope that prevents a child from falling over the edge in fear.

When Abby Sayles’ mom mentioned to Abby’s nurse Matt that her daughter wanted to marry him a chain of events started that have cumulated into a night of Courage, Hope, Love, and Life.

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Abby and Matt at the Abby & Matt’s First Dance

This celebration is one of the most important events that Nick’s Fight to be Healed Foundation sponsors. It’s a celebration, a dance, and a time for families to dress up, be together, and forget about cancer.

We want you to be with us. This dance is free to all children and their immediate families who are currently battling cancer or have finished treatment. For a small donation, it’s open to other friends, families, and anyone else who wants to join in the celebration.

Special thanks to our fellow foundations and volunteers who are donating their resources to make this a night to remember: Maddies’ Mark, Play it Foreward, Cool Cat DJ, Outside the Box Photography, and Elizabeth Fox Photography. And a grand thank you to Glen Sanders Mansion, who is sponsoring the room and many fun surprises!

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Registration ends on January 29, so get your tickets today!

Dance to be Healed Registration