We are There for You

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Know we are here for you.

The uncertainty of cancer can often be the largest stressor when your child is diagnosed. Not knowing if the treatment is working, how you will get time off from work, what the prolonged separations will do to your other children or your family unit, or where the money will come from to pay the growing bills.

Within a month of Nick being diagnosed, my friend Jen at the library said that Gina from the Catie Hoch Foundation wanted to give us gas and food gift cards. I was floored that someone would want to help a total stranger in such a basic way. We were OK, and I didn’t think I should take it when others probably needed it more.

Gina came to the library and gave me the cards. I learned something that day. Sometimes people know what you need more than you do. I accepted them, thanked her, and knew she was there if we needed anything else.

I used the cards when the daily trips to the hospital and doctors took their toll. It helped us financially, but it did more than that. Her outreach gave us that sense of community, of being cared for, of being seen, and comforted.

I never thought I would be in the same place that Gina was with her foundation. Yet here we are. I have always remembered that sense of camaraderie I felt from someone who had been on the same road as me. One of the first services Nick’s Fight to be Healed provided was financial assistance to families. Just in the last month we have supported families with gift cards for food and travel. We have paid to keep the heat on and for mortgages.

These are essentials that everyone needs to remain healthy, safe, and secure. Providing these services reduce stress, but these acts do so much more. When we send a gift card with a handwritten note, we really mean it when we say we are here for you. In addition to assisting with the financial details, we are a shoulder to cry on, an ear to listen, arms to wrap around you when the journey feels impossible. We are kindred spirits who have been where you have been. And even if we haven’t, as people fueled by love, we open our arms to you.

It takes more than medicine and stress reducers to get a family through a cancer diagnosis and back on the road to life. It takes people who will dig deep no matter how painful to show our families that they matter, they are cared for, loved, and valued. That they are human beings going through one of the hardest times in their lives and sometimes just need a simple hug. Or a tap dance and kiss from Chloe, our pet therapy dog.

I am so very proud of what our foundation does, as well as what the other foundations do to give back and raise up our beautiful families. Today I send out a big hug to everyone who needs it and an even bigger thank you to the selfless volunteers and staff who give their hearts, because they simply couldn’t do it any other way.

Giving at the Table

First, I want to give thanks to Karen Patchell, one of the original board members of Nick’s Fight, yoga instructor, and pet therapist, for the clinic for making all the arrangements for our Thanksgiving holiday bags. She is such an integral part of this organization that it literally wouldn’t run without her.

Last Friday Karen and I attended a Spring into Health cooking class, which focused on healthy vegetarian options for Thanksgiving. It was in the chef’s house (Anouk) and not only was her kitchen amazing, but she and her cooking partner, Danielle, were warm and welcoming. It was like coming home from a long trip and being wrapped in a warm blanket and given hot chocolate.

When we came to the table, there wasn’t a rush to chomp down the food and get to the next thing. We savored each dish, gave thanks for being together with some people we knew and others who became friends over dinner. It made me think about how I came to the table. Do I give thanks for the food I eat or do I treat it as something to get done?

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Food is an integral part of our life. Having a full stomach and being nourished sustains our mental and physical well being. Eating delicious together can also be healing. When we sit together in a loving, grateful manner and take the time to savor our food, it becomes a happy and wonderful experience.

After I ate dinner with so many fantastic people, I was happy. I ate healthy foods and felt a sense of community.

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Annette Romano, fabulous board member, and amazing volunteers hard at work.
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Brittney Decker, President of Nick’s Round table, her friend Sonya (left), her sister Lindsay (right) volunteered their time to help out!
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Karen Patchell opening her home to organize the assembling.

This is exactly what these wonderful women set out to create and provide for our families at The Melodies Center. They lovingly put together bags of food that will provide satisfying Thanksgiving meals for our families battling cancer. They understand that giving at the table as well as giving of their time is a heartfelt way to make others lives easier. To give is to receive happiness.

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So from our foundation to your table–we wish you a Happy Thanksgiving and a month filled with goodness, kindness, and positive steps to a healthy family.

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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!

Creating a Ripple Effect

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Abby and Matt, celebrating life!

As we raise awareness this month about childhood cancer, we show the harsh side of it; the devastation, the heartache and pain that our children go through. The posts about childhood cancer facts are very much appreciated, because facts don’t lie. When we are faced with the truth, we can no longer sit back and be complacent.

There are many ways to create change and face a cancer diagnosis. Abby Sayles and her family have shown us a positive and powerful way to battle cancer that is not only effective (Abby is about a year cancer free), but also has caused a ripple effect across the cancer community.

I first met Abby and her family after she married her nurse, Matt Hickling, in a touching ceremony at The Melodies Center. Just this act alone started by the tremendous support Matt showed Abby, raised awareness around the world about what a child with cancer goes through.

Dance to be Healed began to celebrate that support and is now an annual event where children and their families get dressed up, dance, and take time off from their treatment and worries.

For a few years, Abby has walked in our July 4th parade and jumps right into the activity of handing out candy and bags. She truly teaches us that Nothing is Impossible. She is living proof of that.

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Abby always raises awareness in style.

If that wasn’t enough of a ripple effect, Abby and her family started a lemonade stand where she raises money for The Melodies Center and this year for Nick’s Fight to be Healed. Giving back builds community and provides strength to the families who open their hearts to the support.

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Abby, 100% healed and still giving back!

Community makes a huge difference in healing. I truly believe that Abby’s positive attitude helped her to heal. She learned this from her parents and the amazing staff at the clinic.

Now that Abby is done with treatment, she stays connected to her cancer family, because connection continues that ripple effect. The more people understand what a child goes through, the more they will help. When someone who never knew about childhood cancer sees what Abby and other kids have done, then they move forward to create change. Before we know it that ripple turns into a wave of action.

How will you create a ripple effect? What will you do today to help a child with cancer? Doesn’t have to be huge. One stone can cause a ripple.

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.

To the Shenendehowa Class of 2013

When we took your classmate, Nick, to Karigon’s playground when he was about two years old, we had no notion what his attending such a large school district would entail. We didn’t know who his best friends would be, how he would do in class, or what he would want to be when he grew up.  We were only filled with love for this wonderful child.

Nick attended Skano and Karigon Elementary Schools and his brother, Stephen, redistricted to Orenda in 5th grade.  They easily adjusted to the changes and the small classrooms provided that close community atmosphere.  It was the summer before Nick entered 8th grade and Stephen 6th, when Nick was diagnosed with Acute Lymphoblastic Leukemia (ALL). A school plan was implemented, and the Shenendehowa community and beyond reached out to us with open arms and hearts. 
When Nick died suddenly in late October of 2008, our family, friends and Nick’s classmates were devastated.  Jill Bush, the Gowana principal, at the time, came to say goodbye to Nick at the hospital. His teachers visited, and many of you took the time to be with him, despite the horrible circumstances.  Mr. VanGelder, the assistant principal, organized a photo of Nick’s classmates clad in red to show the love you felt for a young boy just stretching his mind out into manhood. You mourned him because you missed his sense of humor, his trust, his loyalty, and his ability to stand out among hundreds of fellow students as an individual and a leader. As a family we were cocooned in the strength and love of a community no longer huge and imposing, but gentle, kind, and compassionate.
When our family and friends formed Nick’s Fight to be Healed Foundation, Dylan Mayo had recently passed away, Sammie Sagnelli was still battling, and Luke Romano was struggling and having an especially hard time.  The Romanos, Sagnellis and the community were empowered and ready to make a tremendous impact on the world of childhood cancer. 
Many of you needed an outlet and a way to make sense of a senseless loss.  You implemented a number of programs throughout these last four and a half years that will forever be etched in our minds.  Some of Nick’s close friends formed Nick’s Round Table, a teen advisory group to help other teens fight cancer. You raised money, awareness, taught others how to talk to their peers with cancer, and you gave HOPE. You visited children in the hospital and kept them occupied while receiving treatment; provided movies and video games; purchased specialized bags filled with comforting items and encouraging letters. You texted cancer patients, made quilts, and sent birthday gifts.  You changed children’s lives so much that over 60 students have since joined, and colleges like RIT are following our example and forming their own chapters of Nick’s Round Table. 
When Nick passed, Stephen was left to begin middle school without the big brother who always looked after him.  We don’t remember much of those three years, but do recall that Stephen was well cared for by you and the Shenendehowa community. You comforted Stephen, played soccer with him, took him to the movies, and treated him like the kid he was supposed to be.  In 10th grade, you hung out with him, talked between classes, and looked after him.  Maybe it was because of his connection to Nick or maybe it’s just who he has become. Whatever the reason, you helped Stephen get through the worst loss a sibling can face. He will miss you.

The beginning of this past school year was hard on our family as we thought about Nick missing his senior year milestones. When our community lost Chris Stewart and Deanna Rivers, the year got exponentially worse. Again you came together and cocooned the families of Chris, Deanna, Bailey and Matt.  Teams who were rivals saw more than competitive enemies; they reached out in sympathy and compassion and helped one another stand again.  Your generation has been asked to give up your innocence way too early. You have been forced to grow up emotionally.  But you have shown that no matter how much it hurts, you are willing to make a difference. 
You are just beginning your lives as adults.  You have risen above these tragedies.  Yes it still hurts, the pain is real and the grief may never truly go away. But you have taken action and you know you can evoke change. So what else can you do? Perhaps when your friend is sick with the flu, you’ll send her a text or give her a call to make sure she’s OK.  When your aunt is in a nursing home suffering from dementia, maybe you’ll visit and hold her hand to keep her connected to your world for a while longer. Perhaps you’ll step into the world of cancer research or become a police officer and educate young adults on the horrendous consequences of drinking and driving or you’ll sit with your grandparent during his last breath of life. 
When you do this, when you open yourself up to giving selflessly and unconditionally, you will understand the amazing gift of love.  Only then will you know that this is what life is all about.  Then you can live your life under that guideline, through those principles and fully comprehend the value of reaching out to others. 
I have heard that Chris and Deanna lived as Nick did—fully and completely engulfed in their love of life, family, and friends.  Their journeys have brought you here—to this moment.  My wish is that their journeys will empower you to make a difference in whatever you do.  So that at the end of your life, you will be able to say, “Yes I followed my path, I made this world a better place and I gave to others.”  Whatever you do, listen to that pulse, that life inside of you that is your guide to letting you know you are on the right path.  It’s stronger than your heartbeat.  When you feel it, you know you are following your journey.  Listen to it. Respect it.  Act upon it.
We are very proud of you.  You have helped so many of your peers get through their own grief, you have helped our family, the Stewart, Rivers, Hardy, and Wind families handle such hard circumstances. You have stepped out of your comfort zones to talk about cancer.  You have reached out to us, the Romanos and countless others to support the siblings who have been left behind.  You are simply amazing.  And this is only the beginning of your lives.  You are destined to be incredible. You are prepared to make your world better, safer, stronger, and more compassionate.
Yes, this community is large. Some people still don’t know about our children or our causes. Some choose not to be involved.  For those who have chosen to reach out and to live with their eyes wide open, this community is as close as a small town.  Thank you to the Shenendehowa School District, the administration and teachers for providing the space for this class to make a difference. Thank you to the Town of Clifton Park and surrounding communities for your endless support.  Heartfelt thanks and appreciation to the Shenendehowa Class of 2013 for caring for others when they needed it most. You are kind, giving, and strong. You have helped us more than you will ever know and we are forever grateful.

Janine and Lucas Cammarata