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.

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.

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.

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.

 

Courage

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This is Nick’s band. This morning I felt compelled to take it out of the box I have of his personal items. I usually just look at everything, but today I needed to wear it. Nick wore this band through his entire journey with cancer, and I feel his energy like a cozy blanket.

I think I needed to wear it because no matter where we are in life, it takes courage to live life as we wish. Situations and crises hit us when we least expect it, and when we are forced to change direction, our belief in ourselves can falter.

It takes courage to do so much:

…to express your truth even if others may condemn you for it.

…to leave the world you’ve always known to walk into a new life of cancer treatment.

…to care for those struggling through any type of illness–mental or physical.

…to redefine who you are in the face of tragedy and loss. It can be a physical part of you lost through surgery or chemo. It can be family and friends who can’t understand what you are going through. It can be anything you may not be able to do right now.

…to move forward without the one you love, whether it’s your child, partner, family member, or friend.

…to reach out and ask for help, when you no longer know how to help yourself.

I think Nick was sending me a message today that he wanted to share with everyone battling cancer or any illness that has turned their life upside down.

Be courageous. And when you feel your bravery slipping, surround yourself with those who will hold you up until you can stand on your feet again.

Revel in the power of love and the knowledge that miracles happen every day. Some of those miracles are our beautiful children who chose us to be their parents and guide us in the most mysterious ways.

 

Expanding your Heart

This past weekend was the 4th annual Purple Tie Affair benefiting Nick’s Fight to be Healed Foundation and The Leukemia & Lymphoma Society through Team in Training program. It’s always a night of celebration, good food, and dancing, but at this event many hearts were bursting.

In the beginning of the evening, we held a special cocktail hour that gave those affected by cancer a chance to share their story. I spoke about our foundation and welcomed everyone to enjoyed themselves, but asked that tomorrow everyone think about what they could do to help a child beat cancer. We all have a special light or passion within ourselves that we can use to make the world a better place and to make a difference for someone battling cancer.

Purple Tie committee and Anthony Yevoli LLS Boy of the Year making a fantastic speech.

Nick had a huge heart. He was such a love bug, compassionate, and enthusiastic. He had a zest for life that was infectious. When I lost Nick instead of sealing off my heart to life, I opened it and reached out to help others with the assistance of my friends and family. I can’t change what happened to my son and losing him will always leave a gap in my life. But by opening my heart and taking on this mission to help children with cancer, Nick has brought more love into my life. He has guided me to children and young adults to make my heart soar with their bravery, determination and simple love of life.

Some of the amazing volunteers and board members of Nick’s Fight!

Today I went to visit my friend, Justin, who has been in the hospital for a bit of time with complications from his treatments. Justin is the ultimate warrior. He has had a rough road, but he remains brave and true to his desire to be healed. Justin was a bit low when I arrived. He looked tired and was curled up in his bed.

I sat and we began to talk about all the fantabulous Marvel comic movies that have been made throughout the years and how they all thread together. Justin knew the characters, the connections, and what movies were being made and were coming out this year. As he spoke, his eyes lit with enthusiasm and true interest. Then our conversation continued onto Greek, Roman, Norse, Egyptian, and Irish mythology. Justin is a powerhouse of knowledge and as anyone knows I love Marvel comics and mythology. When we talked about the Renaissance, I knew we shared something special. By the time I had to leave, Justin was sitting up in bed drinking a coffee coolatta!

I wish that Justin had never gotten cancer. The same way I feel about Nick and every child who has been diagnosed. But if I would have sealed myself off from this world, never to be around children and young adults who are battling, I would have never met Justin. So much of what Justin loves is what Nick loved, and he made me so happy to sit there and talk about what we are both passionate about. Spending time with Justin today made my heart explode with joy!

I hope our visit helped him too. It’s hard being in the hospital every single day when you only want to be at home and with your friends. Justin is a true knight that King Arthur would surely have had at his round table, and when he is better, I hope that he will join Nick’s Round Table.

Thank you, Justin for chilling with me today! Feel better!