Placed Beside Me

Nick was a Lego maniac. He was constantly putting sets together and making his own creations. I have his finished products all over the house.

Today in yoga, the instructor spoke about surrendering in the twist and letting go of what didn’t serve us or was weighing us down. I wasn’t sure what it was I needed to let go, but her words resonated with me.

When I came home prepared to clean, I looked at all the Legos on my bookcase. At the bottom were my journals spilling over onto the floor.

Was it time to get rid of Nick’s Legos? Stephen packed his away before he went to college. One of the difficult parts of losing a child is that I don’t know what Nick would want. He loved technology, video games, reading fantasy. Would he still be into all of that?

It’s the unknown that leads to the what if’s, the second guessing, regrets, and inability to make a decision.

I have learned that what I cannot quite let go, I can place beside me so that it no longer plagues me with sadness. It’s so hard to remove something that was important to my son. The amount of possessions I keep of his doesn’t measure my love for him. That I hold in my heart always. His creations are a reflection of his personality. Sometimes I smile when I see them. Sometimes I cry.

I decided to pack his creations in their form he made into a bin and place them in the basement with all the other toys I have kept of my boys. I took photos first.

Maybe some day I will want to look at them again. Or maybe Stephen’s children will get to know who their Uncle Nick was and make new creations out of his classic Legos.

I don’t know, but I want the choice. And the space I created on that bookshelf? It’s more about the lightness I feel in me, which will allow me to write to and about my boys. Those shelves will hold those journals.

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.

Self-Care

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The countdown for Nick’s Run is 7 days. It’s been a whirlwind of finalizing all the details and promoting the event to make it the biggest one yet. Part of the promoting is being on the radio and TV. I had the pleasure to talk with Marc Kaplan with Siena’s station 88.3.

One of Marc’s questions was what advice would I give to anyone whose child is battling cancer. What advice for the parents? My biggest advice, which is also the hardest to act on is self-care.

For the four months that Nick had cancer, we were in the hospital a lot, and I usually stayed with him. Stephen was only 10 and wanted his dad. I didn’t exercise, I barely left his room, and my diet was terrible. I remember wishing that someone would come and pluck my eyebrows. I was afraid that if I wasn’t there something would happen to Nick. A couple times Luke stayed, and it was wonderful to spend time with Stephen, but I often felt that my heart was split.

Imagine doing this for years. Any parent would do the same and eventually it takes a toll on our bodies, mind, and spirit. It also affects our ability to make decisions. I think I was on autopilot, and taking a break even to sit in silence or do the yoga practice that I do now would have benefitted all of us.

So during this month of Childhood Cancer awareness, we know that taking care of your sick child is the priority. But remember to take moments for yourself to read a book, write in a journal, take a walk, do yoga, exercise, and eat well. Do what nourishes you and gives you moments of peace. It will make a difference in the long run.

What are other suggestions for self-care?

Nothing Tidy about Cancer

What in this photo does not belong?

Nick’s Run is 14 days away. As I’m cleaning up my kitchen counter after doing some late night work for our biggest fundraiser, I laughed at the book that was in the middle of my mess. 

There is nothing tidy about battling cancer. Life gets unruly and upended really fast, especially when you go to the hospital and your child ends up being admitted. It can be weeks before they can go home. With months or or years of treatment, a tidy house or a calm schedule doesn’t exist anymore. 

The only tidy aspect of a cancer diagnosis is perspective and priority. You see that handsome little boy on the run brochure? Lucas and every other child diagnosed become the priority. Keeping a family whole becomes difficult, but as parents we work hard to make it happen. 

The little things that use to bother us and still bother people not directly affected just make us shake our heads. It just doesn’t matter anymore. 

Whatever it takes to heal their child is the biggest priority and so many decisions are based on what is best for the sick child. This can have a huge effect on siblings and not always positive. 

There is nothing tidy or neat about the decision to treat your child with a medicine that will cause lifelong side effects. But it has to be done. 

Tidying up can be life-changing and maybe some day I’ll read this book, but not while children are suffering and fighting to survive. 

Community

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It starts with devastating news and your world shrinks in on itself as you realize that nothing will ever be the same. Your perspective shifts and what use to bother you is no longer relevant. You cherish those precious moments with your children, your spouse or partner, family, and friends, because they may never happen again.

Then you are joined together with the staff at The Melodies Center and your world gets a tad bit bigger and you are held tighter by a larger circle. Then those who have walked in your shoes reach out and take your hand, and you finally appreciate the unbelievable community that has taken you in and feels the same fear, pain, worry, and heartbreak with you.

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This community also cheers you on when the news is promising. They are your biggest fans, your strength, your rock, your cheerleaders.

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And no matter what they have going on, when you need them, they are there for you 100%, no questions asked. They hold you up. They are your foundation. They come from all walks of life, because cancer doesn’t care how rich, poor, tall, short, successful, shy, or healthy you are.

But we care and that is what makes all the difference. There are volunteers who have put aside their own problems, sadness, losses, and hurts to help raise others who are at their breaking point. This is community. This is what keeps me going. I am thankful for everyone who helps with our fundraisers and especially this run.

Register now for our 8th annual Nick’s Run to be Healed 5K. Tomorrow is the deadline to get the dri-fit shirt. For sure that is incentive.

But really what matters is that we all will come together as a community and be there for one another. That is what we do for no other reason than because we care and September is our month to raise awareness.

www.fighttobehealed.org

Muscle Memory

I couldn’t let the day pass without sharing a story about childhood cancer awareness month. Grief is like muscle memory. Your body remembers as easily as the change in seasons. As fall comes, we begin to crave hot apple cider and donuts, the crisp air, and early nights.

This is the time when my most damaged muscle pines for what has been lost. That muscle memory kicks right in at the beginning of September. The first day that Stephen had to go to school by himself without his big brother. Their first birthdays separated, the first Halloween dressing up on his own, the loss of innocence, the pain that seeps back in as stealthily as the leaves begin to change.

Despite all we do to bring about change, it sometimes feels that not enough is being done. No matter how much good I am surrounded with and all the support and love that I am given, my heart still skips and flutters with loss when I think about Nick.

Like so many other families, cancer took away one of my biggest joys, one of my greatest purposes in life. And it just sucks.

There are times when muscle memory is a good thing. For anyone who has lost a child, every season and every anniversary brings the heartache back.

September is Childhood Cancer Awareness Month, but every day I don’t have my son. So every day we should work like hell to find a cure, give comfort, show love, and make a difference for a child battling cancer or any type of life threatening illness. That is the kind of muscle memory everyone should have.

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Our family September 2008.

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.

Milestones

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Last night I finally watched Guardians of the Galaxy 2. I thought of Justin and how much he loved the comic book movies and wanted to see this one. Then I thought of milestones. Justin passed away on January 27, 2017. He wasn’t here for the opening night of this movie or for the rest of the many more coming out this year.

Justin would be going into his junior year. It’s another milestone that repeatedly breaks his mom’s heart. These milestones that hit us like a ton of bricks will continue for the rest of our lives.

Once the college graduations of Nick’s peers were over, I thought there would be a reprieve. However, then the jobs come, the weddings, and the babies. There will always be a milestone that will bring up the pain of losing my son to cancer. It doesn’t lessen the joy I feel for those who are living their lives, it just another hurt that I carry with me.

Looking at Justin’s beautiful smile, you know he was full of life. He loved his mother, his family, his books. Today, I remember Justin, because of all what he taught us, and also because of his potential that was cut short by cancer.

We cannot turn away from what children with cancer go through. We have to raise money for new and improved treatments that provide less side effects. We need to support the families whose lives have been split by this disease. And we absolutely need to support the parents and kids who have lost a member of their family.

Take action and spread the word. Much love to Justin, his mom, and family.

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.

Luke’s Legacy

Everyone has a legacy. As parents we hope our legacy will live through our children.  But as a parent who has lost a child, I have learned that our children create their own legacies and have their own paths.

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Luke Romano’s Legacy lives on, because of the clear vision he had on how he wanted to live his life and how he wanted to be remembered. I am always in awe when our kids with cancer see beyond their illnesses, their fears, their deaths. Luke impressed me with not only his maturity, but his foresight to ask that our families join forces in order to help other kids more effectively as they go through their cancer journey.

Not many adults would look beyond the ego and see the greater good. Luke did and his legacy continues with providing amazing pillows to teens in the comfort bags. The Family Hope Bags are given to newly diagnosed patients so that their parents can focus on their diagnosis and not where their next meal is coming from when their children are suddenly inpatient at the hospital. His legacy continues by providing scholarships to kids to make the world a better place and raise awareness and increase empathy for teens and young adults about the emotional and physical effects of cancer.

I remember Luke today not because this is the day he passed away. I remember Luke today, because he reminds me of all the work that still has to be done. He gives me the strength to keep going, because he would have done the same. His legacy inspires us to never give up and provide support so that kids with cancer can live fulfilling lives the way they want to. So that they can grow their own legacy.

Thinking of you today, Lucas and hoping you and Nick are proud of what we have done in your memories. You continue to guide us.

Soaking up the Good Stuff

Today was pretty magical. I hadn’t been down to The Melodies Center in quite a while. I accompanied Karen Patchell and Chloe, pet therapy dog extraordinaire, to be with Bella when she finished her last treatment. 

We ran into Rob Saba and Angie Silipigno, who both work incredibly hard for our kids. 

Bella saw us and ran down the hall giving us big hugs. I know Chloe is a big draw, but I like to think she was happy to see us as well!

Like the brave warrior that she is, Bella had her port accessed and received her chemo like she has been doing this for years. Well she has. Her parents, Nick and Nicole have done an incredible job of keeping Bella’s spirits high and filling her life with goodness and joy. 


Her grandparents were at this celebration as well as Dr. Gozman, the amazing nurses Holly and Rebecca, Angie our superb child life specialist and so many other staff who are just as excited and happy as her parents. 


That’s because we are all family. We never want a child to get cancer, but if they do then we pull them in and show them the love of a big extended and sometimes loud and crazy family!


We know how love heals all kinds of wounds and illnesses and pulls us out of the deepest despair. Well today love thrived in a children’s cancer clinic and Bella was healed. 


As if this day couldn’t get better, Bella was greeted by her pals, Regan and Lucas! At such a young age they know the power of connections. 


Finally Bella rang the end of treatment gong like she really meant it! It was powerful and heartwarming. 


Thank you to the Caruso family for sharing this precious moment with me and Karen. We are forever family. ❤️🎈🖤