Calm Before The Storm

11 years ago today, I was a carefree mother of two active boys–ages 12 (Nick) and 10 (Stephen). Summer was upon us and even as Nick struggled with ear infections and unexplained rashes, we looked forward to sun and fun.

2005 July (1)

Every summer, we’d write out summer activities on a big poster and check them off as we completed them.

Picking strawberries

Eat at every possible ice cream shop in the area

Swimming at Barney Road

Swim lessons

Bonfires and smores

DSCN1140

That summer was a pivotal one. I had purchased bike locks, because we planned to ride our bikes to the pool, library, and ice cream. Nick would have soon been able to ride on his own, and I wanted to make sure they would be safe.

2004 August3

We also planned a big trip to Florida. Nick wanted to swim with the dolphins. It was to be our first big vacation in a couple years since buying a new house. Our world was golden. We were happy. We were whole. If I could have captured that moment in a single word it would have been joy.

The next day, July 4, 2008, our world plummeted into shock, disbelief, and pain. Nick was diagnosed with Leukemia. We never used our bikes or those locks. They still hang in the garage. Nick made it to the pool one time and was too ill to swim. We cancelled our trip to Florida–fear shackling us close to home. Our family was split in half with one parent in the hospital and taking Nick to treatment and the other with Stephen.

Four months later Nick passed away. As I sit at his spot in the Jonesville cemetery, I wish for that life back. I mourn for my son and the harsh reality of so many children battling cancer.

I give in to these moments and be with my son. Then I move once again. Back into life as it is now.

Tomorrow we walk in the parade that my boys loved to attend. It’s a reminder of what we lost, but also of how much work is yet to be done.

Our lives have changed. I have learned to focus on what I can control. I couldn’t control the disease that took Nick, but I made sure he knew he was loved forever. I can’t control the fact that 90 children are diagnosed each year just in our area, but I can show compassion and support them through our foundation.

NFTBHF10yearlogo

I can control how I live each day. I take the time to sit and be with my boy, no matter where I am. I embrace the precious moments I have with Stephen. And I forge my path and live my life fully until I see Nick again.

Gillette Carnival Brings Smiles

There’s nothing like a carnival packed with rides, games, cotton candy, and fried dough to bring a smile to a child’s face. When you add in friends, old and new, then it’s a full out party. Thursday, May 30 was Nick’s Fight to be Healed Foundation’s annual Melodies Center Family Night at the Gillette Carnival in Halfmoon.

NicksFightCarnival2019008

For the past four years, Nick’s Fight has been the recipient of the carnival’s generosity. For every night they are in this location, they donate a % of ticket sales to our foundation. In addition, they donate 50 wristbands for endless rides to our children and families who are battling pediatric cancer at The Melodies Center. The Gillette family provides an area for us to hand out bags for kids to carry their prizes in and raise awareness.

NicksFightCarnival2019038
Angela and Sari–two of the many volunteers who make this event a success!
IMG_6281
Becca, Grace, and Jack on far right support families like the Caruso’s and take the kids on the rides!

 

NicksFightCarnival2019002
Lilly, Abigail, and Charlotte have learned firsthand how powerful giving back can be.

Moments like these are what provide the resilience and strength needed to help a family walk alongside a cancer diagnosis. I say walk alongside, because once your child is diagnosed with cancer the connections, fears, side effects, and life changes feel like they are always there. It’s like an endless marathon.

Events like these are precious, because the wonderful nurses from the clinic enjoy the children outside of treatment, and they get to visit Chloe the therapy dog, and Karen, the clinic yoga instructor, without all the sounds and distractions of treatment.

IMG_6272
Bella is done with treatment, but staying connected to her Melodies Center family is key to a healthy transition post cancer. Holly is our nurse extraordinaire at Melodies.
IMG_6269
Chloe doesn’t do rides, but she loves being petted as she hangs with her momma, Karen, and visits with all the children!

We truly believe that in addition to medicine, healing comes from having fun, being around people who lift you up and make you laugh, reducing stress, and creating a positive family environment. We can’t thank Betty and Jerry Gillette and the rest of the Gillette team for their generosity and support. Special thanks to Jim and Noreen Loiselle, who nominated our foundation for this event. We appreciate every volunteer who came out to help for the week. It takes a big family to heal our children.

Enjoy some photos of very happy faces!

IMG_6309
Olivia, our warrior for 2019 Nick’s Run with her little sister, Ginny.

IMG_6311IMG_6273Carnival 5

Carnival 4

 

 

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.

Stephen_Emily_Andrew_nook
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.

Stephensmiling_nook

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.

Nicks_Nook
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.

nicksnook2019
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.

ShadeAngelica
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.

saladbellinifood

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.

journals

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.

sydneyjournals
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.

shadejournaling
Mary Beth, the child life specialist, and Shade writing together.
journaling
Kassidy, in front, traveled all the way from college in Utica, to make the event.
Parrinogals
Families that journal together have a great deal of fun!
lynnteaching
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!

ShadeandAlyssaParrino1.31.19
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

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

 

Childhood Cancer Awareness–First Day of School

Today was the first day of school, and I love watching the neighborhood kids take photos and hop on the bus for a new year of excitement and learning. Some may be going to a new building or starting at a different school. Some may connect with old friends or meet new ones. No matter what, it’s a happy day filled with joy and probably some anxiety.

2004 september first day of school
First day of school in our new house when the boys were 8 and 6.

Nick was diagnosed with leukemia in the summer, so many of his school friends never knew he was sick. Social media wasn’t readily available. We updated family and friends through the CaringBridge website, but when school came around, Nick only went on his first day. No one understood how ill he was. He had been accepted for the DDE program, since he wanted to be a technology teacher, but eventually he had to drop it as he couldn’t keep up with the work.

We hired tutors, but he was so fatigued, he struggled with motivation and learning. Shenendehowa School District was wonderful in that they gave him the basic requirements for homework, but the isolation and missing his classmates was very hard.

It was difficult for Stephen as well, since he and his brother would have been in middle school together. Instead Stephen went on the bus alone, and they missed all those possible memories together. When we lost Nick only two months into the school year, it rocked the school community.

Cancer changes the formative years of children. Losing a classmate is traumatic. Losing a sibling is life-changing and devastating. The ramifications don’t often show up until years later.

When a child with cancer attends school, they deal with side effects, possible infections from a compromised immune system, bullying, isolation, and misunderstanding. A child doesn’t have to look sick to have cancer, so it’s important to create empathy and educate students on what a child with cancer or any other chronic or life-threatening illness is going through. What an opportunity to teach compassion and make a difference in someone’s life.

Besides missing out on so many wonderful memories, the world lost the potential of Nick, someone who wanted to use technology to help others, who enjoyed working with younger children and making them smile.

Today I remember all the children who are no longer with us and their parents who struggle with those firsts every single year. And I send support and hugs to our children in treatment who missed their first day. I hope you get back to school soon.

Be aware that someone might be struggling more than you know. Show compassion and you might give them that reason to smile.

September is Childhood Cancer Awareness, but every day is the chance to be kind.

Childhood Cancer Awareness–Team Support

We have said that when a child is diagnosed with cancer, they become part of a family that they might not have wanted to be a part of, but it’s a family that makes the journey bearable.

Most familiesI know create a team name to unify their family, raise awareness, funds, and provide hope. It’s in our nature to rally for the underdog, the team that is beating the odds, and is determined to win.

patientshirts.jpg

These team names and slogans a only a few of the hundreds of families just at The Melodies Center who pull together to make miracles happen. In addition to current research and safer treatment, families need emotional support. They need their team.

Every family handles cancer differently, but everyone needs to know they have a team in their corner who will remain with them through their entire journey. Family and friends who help take care of siblings, cook dinner, clean the house, mow the lawn, and be there with a shoulder to cry on.

Sometimes despite our best efforts, we lost one of our teammates and we are never the same. We miss Justin, Nick H., Reese, Markel, Nick C., Lucas, Maddie, Ben, Myles, and so many more. But our team never quits, because there are other children and teens who are still playing this challenging game of cancer.

The families who lose their child must not be forgotten. They are always a part of our team and still need support and love.

No matter what team you are on in cancer, everyone wants you to win, to have a child who is healed and will live a full life.

Please share your child’s team slogan if you have it on a t-shirt or the words. Inspiration often comes from our hardest moments, but our teams gives us hope.

Raise awareness for childhood cancer during September and all year long.

 

September-Childhood Cancer Awareness Month

family photo 2008

This is the last family photo we have of us together. It was Labor Day weekend 2008, and our family convened to share the love and laughter that has always carried us through hard times.

Nick had developed an infection, had appendicitis, and spent most of September in the hospital. It’s like a time warp. The world continued around us, people came and went, but we were stuck in this cocoon of uncertainty. I had always assumed Nick would survive, but with the heavy doses of methotrexate he had received, the infection became life threatening.

As a parent of a child with any life threatening illness, it’s very difficult to make the right decision. We were exhausted, scared, and not familiar with this disease. We had multiple doctors giving their suggestions and sometimes it was like throwing a dart. Nick continued to decline, but we still rallied surrounded by hope and the need to believe that he would be alright.

September is Childhood Cancer Awareness month. It’s one of my lowest months of the year, because my heart remembers how much Nick suffered. I didn’t journal much in that month and really I don’t want to remember the details.

It is 10 years since Nick battled cancer. Time doesn’t heal, and it doesn’t make it acceptable that I lost my oldest son. It doesn’t mean I’m over it or that I’m always OK.

10 years later, I’m living with Nick’s loss beside me. Sometimes the grief is a burden I have to carry, and it weighs heavily on me. Other times I can stand tall and walk alongside it and hold others up.

I share this because I want those who have lost their child to know that I am here with them. I will walk alongside them, so they know that some day they will be able to walk alongside their grief. Grief is chronic. It flairs up, it eases off, and then ruptures into painful boils, scabs over, and starts again.

I may never be whole, but I can live a fulfilling life. You might not believe it right now and that’s OK. I’ll be with you through this journey no matter what point you are at.

Taking action, raising awareness, demanding better treatments for our children battling cancer is the path of those who are on this journey with me. September is Childhood Cancer Awareness Month, but every day too many children are diagnosed.

Remembering Nick on Independence Day

July 4 is a day to celebrate independence and the freedom our forefathers fought for us to have every day. 10 years ago, it became the day Nick was diagnosed with leukemia.

I believe there is emotional scar tissue with trauma. As July 4 approaches, I feel lethargic, sad, and loaded down with the grief I work to overcome every day. My mind and body know what’s coming. Once July 4 starts, even though I don’t relive all the terrible moments of his cancer journey, part of my mind and body remembers it. The emotions find their way to the surface.

1999 July 4
July 4, 1999

But just as there is emotional scar tissue, there also is emotional endurance that fortifies me with a strong foundation to get back up when the scar tissue limits my ability to live life to my fullest.

 

Nick t-shirt
July 4, 2008–the day Nick was diagnosed

What gives me this endurance? Surrounding myself with family and friends who lift me up. Those who came the day we heard the news, took care of us when we had to say goodbye, and have supported us over the last 10 years.

They know when I’m faltering, when Stephen needs space, when Luke needs a distraction. I don’t have to say a word, because they know today is a very hard day, but we live it remembering an amazing, enthusiastic, and fun boy who was taken took soon.

Over the years, I have learned what I need to do to break up the scar tissue and provide self-care. Sometimes, I do really well, and I think yes, I can do this. When I think of Nick I smile and reminisce about my two energetic boys who were inseparable.

Other times, I’m flat on the floor, as another friend described it, and I can’t imagine going through the rest of my life without one of my sons to hold, talk to, and share his life experiences with. These are the times when my foundation of family and friends soften my fall and stretch the scar tissue until I can stand again.

I’m in a place today where I am searching for the good. I am grateful for Stephen and so very proud of him. He is doing what he needs to do to live with his loss, and I respect that. My husband is my biggest foundation and knows when he has to catch me. I try to catch him as well. We are continually learning what we each need and give one another the space to grow and grieve.

When I fall and take a hard hit, I give myself permission to reach out. I know I don’t have to be strong all the time. I’m not. I can’t be. Last month was one of those times, and I am grateful for my family and friends for saving me from falling off the cliff.

Losing a child is not an easy journey. Having a child with cancer is not easy either. It’s a road of ups and downs, fears and triumphs. Cancer steals more than our independence.

Today I wish everyone a Happy and healthy 4th of July. For those missing their children, have people to catch you when you fall. We are here for you. For our families currently battling, never give up and keep fighting. For everyone touched by a life-threatening disease, savor every moment and always have hope.

Much love to my boy.  We have lots of Double Bubble to give at the parade. Always in my heart.

Gillette Carnival is in Town!

IMG_0661

It’s that magical time of year when cotton candy, fried dough, and spinning rides are the highlights of a child’s life. The Gillette Carnival is in town!

The Gillette family has always donated a part of its proceeds to different charities. For the last two years, Nick’s Fight to be Healed Foundation has been one of the recipients. Their support is greatly appreciated as is the support of the Loiselle family who made this happen.

This year’s carnival is June 5-June 10 at The Town of Halfmoon park. The very best part of this carnival is on June 7, when it’s Melodies Center Family night! From 6-10pm, children battling cancer get a free pass on all the rides, which is donated by Gillette. They have a night of fun and not worrying about their treatment or how cancer has completely flipped their lives upside down.

Contact Courtney Hill at The Melodies Center if you and your family would like to go.

Gillette Carnival 2018 Flier

Their parents can take a break, because teens from Nick’s Round Table will be there to join them on the rides.

One of my greatest joys in forming Nick’s Fight to be Healed is hearing laughter and see smiles on our children’s faces. It’s takes more than medicine to heal a child and that is why we here. Gillette Carnival is making our job even easier.

For more information on the show, visit Gillette Shows

 

Family Connections Program

support flier

 

It takes amazing doctors and medicine to physically heal a child with cancer. It also takes social workers, child life specialists, music therapists, art therapists, therapy dogs, and other forms of therapy to emotionally heal a child and their family from cancer. This isn’t a quick fix. During treatment, many programs are available when a child is inpatient or in the clinic. Nick’s Fight to be Healed Foundation, along with many other practitioners and fabulous foundations, provide distractions and stress-relieving programs. These are just as important to help a child, their siblings, and family live a fulfilling life after treatment.

This idea of connecting our families outside of the clinic and hospital has long been a wish for our foundation. With the guidance of Courtney Hill, Licensed Clinical Social Worker and OSW-C (Oncology Social Work Certified), this is now happening.

On Wednesday, March 7, the pilot Family Connections program will begin. Its purpose is to bring families affected by cancer, no matter where you are in your journey, together to build community, share thoughts, feelings, ideas, and connections.

Karen Patchell, board member of Nick’s Fight to be Healed Foundation, is a Baptiste-inspired Registered Yoga Teacher for children and adults. She began the Flow to be Healed program at the clinic in February 2017. Fun games and simple poses empower a child to develop tools that help them move and use breath and focus to take their mind off any distractions or discomfort. Yoga improves their self-confidence and heals mind, body, and spirit. Children and siblings will have their own separate yoga activity and then parents, caregivers, and older teens will have the opportunity to stretch, flow, and decompress. Remember to wear comfortable clothing! That’s all you need.

Janine Cammarata is co-founder and president of Nick’s Fight to be Healed Foundation. She started the foundation in memory of her son, Nick, who passed away on October 26, 2008. Janine is a published author and teaches journaling for healing and self-awareness through her Write to be Healed program. Journaling encompasses so many different art forms and topics from daily events, junk journaling, goal setting, tracking, and buckets lists. But it can also be transformative, life changing, as well as healing.

This program is open to everyone in your family. We hope you can take advantage of it. The next one is scheduled for April 4. Below are some FAQs you might have. Please let Courtney know if you can come, so we can have enough supplies for everyone.

It takes more than medicine to heal and together we are stronger.

group FAQ

Dance Celebration

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

cake.jpg

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.

decorations

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.

courtney
Courtney of Pixie Hair Salon styling Maddie’s hair!
jackiedoinghair
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!

Cameron
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.

savannahandmaya
Savannah and Maya hung out at the kids’ table doing activities.
nicksroundtable
Nick’s Round Table Teen volunteers!
artsandcraft
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!

georgeandjoe
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.

 

The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

Justinphoto (1)
Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

Nick t-shirt
Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.