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.

A Force to be Reckoned With

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This past Sunday, an amazing group came together to not only raise money for Nick’s Fight to be Healed Foundation, but also provide a place and a path to healing and breakthroughs. Karen Patchell has spearheaded our Flow to be Healed program at The Melodies Center, and we are working on a program for parents as well.

Two Baptiste teachers, Sheryl and Tanya led and assisted the class speaking of all that is possible no matter where you are in your life. Two other teachers, Jess and Carly were participating, and their presence strengthened me as I dedicated my practice that day to Nick. Others were volunteers who help our children as they battle cancer. While others were on their own cancer journey, but were in a supportive atmosphere where illness was left at the door. Some may have come to do yoga, but left with a new perspective.

We are a force to be reckoned with. It doesn’t matter where you are in your life. Everyone has a journey, a story, a current fight, feelings of sadness, fear, or trauma. This amazing yoga community creates a holding space where you can go and be with whatever feeling is within you that day. You have a place to let it out. Having this force of support gives me strength.

Maybe it’s not yoga for you, but it can be. Maybe it’s the community of parents going through the same situation. A child fighting for her life. You are in the same place because of circumstances, but connected by the force of hope that will always rise in you.

Whether it’s doctors, nurses, child life specialists, social workers, family, friends or volunteers–we are a force that is more powerful than cancer. We are a force that will hold you until you can stand on your own two feet once again. We will hold your place until you return. Nothing is Impossible.

Happy 5th Birthday, Chase!

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Chasing away Leukemia. That is what Chase has been doing since he was a one month old baby. His mom had brought Chase in for his shots and the doctor didn’t think Chase looked right. They did an ultrasound and his liver and spleen were 3x their size.

It took 15 times to draw blood because his blood was a big clot. Finally, his parents found out that he was 98% filled with cancer blasts and his white cell count was 1.8 million. The doctors had never seen that high of a number in an adult! The doctors didn’t feel that Chase was going to live. An emergency christening was performed and that night his mom held her baby tight. She woke up to him screaming and that was when she knew they were in for a fight.

Chase’s family went from Syracuse to Albany to be close to The Melodies Center that would treat him. They stayed at the Ronald McDonald House in Albany, which has been like a second home to them through the years.

Chase has endured mouth sores, fevers, infections, and illnesses. He had chronic C-diff. He couldn’t tell his parents what was wrong. He just cried and cried. They had to permanently move to Albany. Two years later Chase ended his treatment. The family could finally get a chance to lead a normal or at least simpler life. 6 months later as his mom tried to go back to work, Chase went to the doctor for anemia, which in itself wouldn’t be big deal. For a child who has had cancer, turned out it was. Chase’s cancer was back.

This time he had to have a bone marrow transplant. Chase knew what was going on and in his mind his parents were putting him through this. He didn’t understand why. The hardest part about being a parent to a child with cancer is knowing that they will have pain and further sickness to heal. You have to sit back and watch. It’s only natural for a child to take it out on their parents because of unconditional love, but that doesn’t make it any easier to take.

This family has been separated, transplanted from place to place, Chase has suffered so much dealing with horrific side effects such as Graft vs. Host disease. Everyone suffers with him, because it’s so much to bear and witness. I can’t imagine the emotional rollercoaster that the whole family has gone through over and over again.

I have seen cancer tear families apart. It has broken marriages. It has ended lives. But Chase’s family stands strong amidst the rubble and battle. No it has not been easy, but they have done everything needed to be done in order to do the best for their little boy. That may not have been what has been best for everyone else, but they did it because that is what family does for each other, no matter what.

The community’s emotional support has also been outstandingly positive. Everyone who  helps this family, shows up big time. It doesn’t matter what it is. The need to ease this family’s pain and show Chase and his siblings that the world can be a great place is strong.

Chase proves this every day. Today is his birthday. He has shown that with persistence, prayer, lots of love, and amazing medicine, he is a miracle. He is a beautiful and courageous boy who is here to make an even bigger impact on this world than he already has. Happy Birthday, Chase! May you have tons upon tons of more happy days!

Nick’s Round Table–Camelot at its Best

Two years ago when many of Nick’s friends who were members of Nick’s Round Table graduated, I feared that this incredibly motivated group would diminish. Under the guidance of Nick’s younger brother, Stephen, and an amazing board, this group has flourished. Although not everyone comes to the meetings, we have over 100 members of Nick’s Round Table who continue to help out when they are home from college or have started their own groups at their school.

Over the past two years, Nick’s Round Table has increased the media library at The Melodies Center Clinic, shopped and handed out over 50 Nick’s Comfort Bags, put together 160 Family Hope Bags, implemented the Holiday program where families received bags of food for Thanksgiving and gifts for Christmas, raised money at Nick’s Run with a very fun carnival, and are in the process of installing a Teen Technology Room at the new HEMONC rooms on D7 at Albany Medical Center. This is on top of keeping up with school, jobs, sports and other extracurricular activities.

Stephen has told me that he’s concerned about the future of Nick’s Round Table when he leaves and that Nick’s spirit is what guides this group. This is something that can’t be forgotten. Now he didn’t mean that by him leaving it would fall apart. What he meant was that as the founding members, of which he was one, leave how do we keep the spirit of Nick alive among young adults who didn’t know him? For example, we hand out Double Bubble gum at our July 4th parade because that was Nick’s favorite.

I believe that Stephen and the other seniors who were very close to Nick and Stephen have built a very strong and durable foundation for this group. Plus, they have a very positive and emotionally charged new board who will do astounding things this year.

Thank you to the outgoing board:
Stephen Cammarata, President
Katie Collins and Sammie Sagnelli, Co-vice presidents
Emily Hayes, Treasurer
Julia Geisel, Secretary
Dante Cilento, Fundraising Chair
Emily Patchell, Media Library Chair
Colin Rowe, Technology Chair

Welcome to the new board:
Katie Collins and Sammie Sagnelli, Co-presidents
Erin Doescher and Kendra Sisco, Co-vice presidents
Emily Hayes, Treasurer
Becca Abel, Secretary
Lauren Sawicki and Elizabeth Sibson, Co-Fundraising Chairs
Maddy Healy, Media Library Chair
Kate Isaksen, Technology Chair

L-R: Katie Collins, Sammie Sagnelli (cancer survivor), Erin Doescher, Kendra Sisco (cancer survivor), Emily Hayes, Becca Abel, Lauren Sawicki (not pictured: Elizabeth Sibson, Maddy Healy, Kate Isaksen)

None of they could have been done without our wonderful liaisons Diane Lange, Barb Brosnan, Annette Romano and Ann Frantti. Their guidance has been invaluable. Ann and Stephen have developed a wonderful relationship that spans generations and I think she will miss Stephen’s unique form of running a meeting!

Stephen and Ann Frantti who always understood Stephen’s thought process! Thank Goodness!

Stephen and me at the last annual gathering. We always had a great time bantering!

As I try not to think about being an empty nester in 44 days, I am so very thankful for all the teens in my life. They will not only keep Nick’s Round Table going strong in their mission to help other teens fight cancer, but they will keep me busy when I miss Stephen. Not only will I miss his craziness, loud music, and texting me for food (when he is in his room!), but I will miss running meetings with him. This group has brought us so close and I can’t imagine not having Stephen at a meeting like I have for the last 5 years. But I thank him for choosing to devote so much of his time to his brother’s memory. I look forward to working with so many new volunteers and continually building Nick’s legacy. Nick knew what he was going when he brought them all my way!

Thank you to all the graduates for your time and dedication and good luck in your future endeavors!

Some of Nick’s Round Table members preparing for July 4th parade!