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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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.

 

Love Finds a Way

Today we lost a brilliant and beautiful soul, my friend Justin Bruckbauer. When my husband found me crying and I told him, he said that if you are going to let love into your heart, then you have to remember the goodness and joy that he brought into your life.

He was so right. If you met Justin, you couldn’t help but feel the love that he had for everyone who crossed his path. He was accepting, smart as a whip, and so very knowledgeable.

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2015–Justin joined us for our annual donation to The Melodies Center. Pictured with me and Dr. Gozman.

Justin taught me that no matter how much my heart breaks, love will always find a way to heal it. He taught me that despite the pain of losing someone special, I am grateful to have known the power of love and soak it in as this is what gets us through the sadness.

I had the privilege to see Justin this past Monday. I felt a sense of urgency to go see him and knew I had to visit. I am so very thankful that I did. We had the most engaging, fun, and fantastic conversation. Justin asked, “You like the Marvel movies, don’t you?” “Yes, I do,” I replied.

And then he was off. Justin talked about which movies came out first and how the infinity stones were entwined in the different series. He showed me the trailers to the new Logan and Guardians of the Galaxy 2 movies, and said how he looked forward to seeing them. I will go watch them in memory of this beautiful young man, who was a superhero to so many.

We talked about Greek, Roman, Norse, and Irish mythology. His faith and knowledge of the Bible and history amazed me. I felt completely at home talking to him about art and writing, and we discussed what other superheroes we could create. We even talked about Wonder Woman, my favorite.

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We could have kept talking forever, and it makes me sad that I won’t have the chance to continue our conversations. But Justin gave me the gift of love on Monday, and I will forever keep my heart open, so I will always know that feeling. It hurts, I know, but the alternative of not sharing my love with kids battling cancer isn’t an option. My heart breaks for his family and especially his incredibly brave and strong momma.

Justin, I know I will see you in my dreams as the superhero you are. Give my boy a hug for me.

Blessed to be a Mother

When I was a teenager, my plan was to be a lawyer, drive a Porsche and never get married or have children. It’s safe to say my life did not turn out that way and I’m so very glad. When I think about the decisions I have made, wrong paths I have followed, or my personal imperfections, I remember that I am a creator and protector of the greatest gift our world could ever receive–our children. Mothers are the warriors who are absolutely and irrevocable dedicated to our charges.

Halloween, 1997

The status and honor of the title ‘Mother’ never ends. As our children grow and move beyond our  reach, we always are their mothers. My spiritual connection to my children’s souls grow and flourish as we live our lives. I have written before that Nick’s path is not what I would have wanted and especially on Mother’s Day I miss him being home as he would have been from his first year of college. But as any mother does, I work toward keeping an open connection with him and know that he is as much a part of me as Stephen is. I cherish all that we have lived.

My birthday 1998

The beauty of motherhood is that it extends beyond my birth children. It reaches to my godchildren, nieces, nephews, and friends’ children whom I consider as much my own. Motherhood encompasses the children I have been blessed to know despite the sadness of their cancer diagnoses. I share in their joys and their sorrows. And even though terrible circumstances have brought us together, I am graced by their presence and the lesson that life is so fragile. Mothers are the ones who hold their children, gently rub their heads, hurting bellies, sore backs with a tenderness and warmth that heals all hurts. I have seen aunts, grandmothers, sisters, and siblings take on the role of mothering and the peace that arises from their selfless giving is priceless.

Nick getting ready to go on a camping trip. First time away from home.

The connection of a mother to her child can never be broken because we have shared the most intimate and primal connection when our child is in our womb. But that is not the only way we become mothers. Those amazing moms who have taken another’s birth child into their heart womb have that same umbilical connection.

Cape Cod 

As my boys venture forth on their paths of life and I loosen my hold, I know they will forever be a part of me and I am very grateful. So as the sun shines on me today and my beautiful children, I am thankful for all who are connected to me and whose children have opened my heart.

Old Forge vacation 2006

Happy Mother’s Day and may your connection to your children bring you peace and joy.