Dancing in the Woods with Family

 

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Family. They come in all packages and sometimes when you least expect them. I saw Dr. Joanne Porter who was Nick’s oncologist at the 34th Annual Dancing in the Wood gala for The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Med.

I literally hadn’t seen her in months, and it was like I had seen her yesterday. When Nick was diagnosed, she said she was married to us now. Whenever we have needed her, she has been there. That’s family.

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I had no idea that cancer survivor and extreme frisbee player extraordinaire, Matt Bissett, was going to be at the event! Turned out that his entire family was there including his beautiful wife. They were in the video along with three other survivors. It was like a homecoming and family reunion all in one. To see Matt healthy and glowing makes all the hard work worth it. This is why we do what we do–to make sure our children and young adults grow into healthy and positive adults. His family had a wonderful time and my heart grew watching them all dance.

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Having some of my tribe attend is always a plus. They already know how important the mission of Nick’s Fight is, but when you connect it to the larger picture of how many children The Melodies Center supports, the need grows. 900 children a year are treated there and this event is only one of the many that raises awareness and funds.

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Family grows and builds as we look past the diagnosis toward having fulfilling lives post treatment. Kendra Sisco and Kacey Sisco (no, not related, but both cancer survivors) are doing just that. Staying connected to the staff and organizations who helped them through the hardest times in their lives is essential. I’m very excited to be offering more opportunities for connections in 2018. But the fact that they support each other is fantastic and emotionally important. Staying connected in any family is hard and for our cancer families absolutely vital.

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Two of some of the hardest working people at the hospital, Rob and Angie don’t slow down when it comes time to gala and event hopping. They balance work, family, and fundraising to raise awareness and much needed funds. Part of our purpose for attending these events is to show our support and express how important their roles are. Angie Silipigno, Courtney Hill, and the nurses, and other staff who help our kids every day at the clinic are truly superheroes who go beyond what their job entails. They stand true to what they believe in–the patients who are battling.

This year’s event was a true testament to a group of people working together to make change, raise awareness, and celebrate life. We are fortunate to have family who keeps us going and understands what it means to keep dancing through the woods toward a happy and healthy life.

Holidays

Woke up this morning not really excited about Thanksgiving. Part of me wants to stay in bed and avoid the day. Why? I think back on my dreams. Nick visited. Reality hits. Oh yeah. Sadness. No matter how many years go by, sadness, regret, loss, and pain will always be there on a holiday.

I think about the families who are having their first Thanksgiving without their child. For the first two or three holidays, I set a plate at the table for Nick. I needed that space for him to know that we would always love him and he was remembered.

I also had a candle burning near a photo of him and my dad welcoming them. We have Thanksgiving at my sister, Michele’s house. She gave me that space and knew we needed it. That is key to being with grief, and I love her for that.

Then after a while I didn’t need that space. It wasn’t because I forgot Nick or got over the loss. Neither will ever happen. I learned that his place is within and around me. The photo and candle stayed adding a photo of Luke’s dad when he passed.

Now I think of Nick. I remember stories of him, his funny faces, and smile.

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His love of cream puffs and Grands. The joy all the kids felt being together. It’s not the same. It never will be. So on my holiday mornings, I spend time with Nick. I write to him. I be with him as he is now. When I can come the holidays like that, then I can be with what is. I can find joy in the moment, right now.

Just like I make sure Nick and I have that special time together, I do the same with Stephen, Luke, and my family.

If you are missing your child today or any loved one, give yourself the time to be with them. Take those precious moments to feel their light and let your feelings flow. Then be with those who are sitting around your Thanksgiving table and soak in their love.

Wishing everyone a peaceful Thanksgiving.

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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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.

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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.