Childhood Cancer Awareness–First Day of School

Today was the first day of school, and I love watching the neighborhood kids take photos and hop on the bus for a new year of excitement and learning. Some may be going to a new building or starting at a different school. Some may connect with old friends or meet new ones. No matter what, it’s a happy day filled with joy and probably some anxiety.

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First day of school in our new house when the boys were 8 and 6.

Nick was diagnosed with leukemia in the summer, so many of his school friends never knew he was sick. Social media wasn’t readily available. We updated family and friends through the CaringBridge website, but when school came around, Nick only went on his first day. No one understood how ill he was. He had been accepted for the DDE program, since he wanted to be a technology teacher, but eventually he had to drop it as he couldn’t keep up with the work.

We hired tutors, but he was so fatigued, he struggled with motivation and learning. Shenendehowa School District was wonderful in that they gave him the basic requirements for homework, but the isolation and missing his classmates was very hard.

It was difficult for Stephen as well, since he and his brother would have been in middle school together. Instead Stephen went on the bus alone, and they missed all those possible memories together. When we lost Nick only two months into the school year, it rocked the school community.

Cancer changes the formative years of children. Losing a classmate is traumatic. Losing a sibling is life-changing and devastating. The ramifications don’t often show up until years later.

When a child with cancer attends school, they deal with side effects, possible infections from a compromised immune system, bullying, isolation, and misunderstanding. A child doesn’t have to look sick to have cancer, so it’s important to create empathy and educate students on what a child with cancer or any other chronic or life-threatening illness is going through. What an opportunity to teach compassion and make a difference in someone’s life.

Besides missing out on so many wonderful memories, the world lost the potential of Nick, someone who wanted to use technology to help others, who enjoyed working with younger children and making them smile.

Today I remember all the children who are no longer with us and their parents who struggle with those firsts every single year. And I send support and hugs to our children in treatment who missed their first day. I hope you get back to school soon.

Be aware that someone might be struggling more than you know. Show compassion and you might give them that reason to smile.

September is Childhood Cancer Awareness, but every day is the chance to be kind.

Family Connections Program

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It takes amazing doctors and medicine to physically heal a child with cancer. It also takes social workers, child life specialists, music therapists, art therapists, therapy dogs, and other forms of therapy to emotionally heal a child and their family from cancer. This isn’t a quick fix. During treatment, many programs are available when a child is inpatient or in the clinic. Nick’s Fight to be Healed Foundation, along with many other practitioners and fabulous foundations, provide distractions and stress-relieving programs. These are just as important to help a child, their siblings, and family live a fulfilling life after treatment.

This idea of connecting our families outside of the clinic and hospital has long been a wish for our foundation. With the guidance of Courtney Hill, Licensed Clinical Social Worker and OSW-C (Oncology Social Work Certified), this is now happening.

On Wednesday, March 7, the pilot Family Connections program will begin. Its purpose is to bring families affected by cancer, no matter where you are in your journey, together to build community, share thoughts, feelings, ideas, and connections.

Karen Patchell, board member of Nick’s Fight to be Healed Foundation, is a Baptiste-inspired Registered Yoga Teacher for children and adults. She began the Flow to be Healed program at the clinic in February 2017. Fun games and simple poses empower a child to develop tools that help them move and use breath and focus to take their mind off any distractions or discomfort. Yoga improves their self-confidence and heals mind, body, and spirit. Children and siblings will have their own separate yoga activity and then parents, caregivers, and older teens will have the opportunity to stretch, flow, and decompress. Remember to wear comfortable clothing! That’s all you need.

Janine Cammarata is co-founder and president of Nick’s Fight to be Healed Foundation. She started the foundation in memory of her son, Nick, who passed away on October 26, 2008. Janine is a published author and teaches journaling for healing and self-awareness through her Write to be Healed program. Journaling encompasses so many different art forms and topics from daily events, junk journaling, goal setting, tracking, and buckets lists. But it can also be transformative, life changing, as well as healing.

This program is open to everyone in your family. We hope you can take advantage of it. The next one is scheduled for April 4. Below are some FAQs you might have. Please let Courtney know if you can come, so we can have enough supplies for everyone.

It takes more than medicine to heal and together we are stronger.

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Annual Donation to The Melodies Center

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Nick’s Fight Board L-R: Liz Carr, George Sisco, Colleen Williams-Wright, Dr. Lucas (Director of Pediatric Oncology), Angie Silipigno (Child Life Specialist, Melodies Center), Janine & Lucas Cammarata, Jonathan Isaksen, Annette Romano. Not in photo: Karen & Mark Patchell, Ann Frantti, Angela Chieco & Susan Sukols

A heart full of love and time spent helping others is a good day. When we come together to share the fruit of our board and community’s hard work that is a fantastic day.

On Thursday, December 14, Nick’s Fight to be Healed Foundation donated $25,000 to the Child Life Specialist position at The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Medical Center. In addition, we donated $15,000 toward technology needs in the new teen technology room that is currently being built in the pediatric oncology clinic.

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Lucas Cammarata, Angie Silipigno (Child Life Specialist), & Janine Cammarata

Lucas and I, as well as Annette, have seen first-hand how important and vital the child life specialist is to the children and teens being treated for cancer. They balance the medical and emotional needs of each patient. Angie is the only child life specialist in the clinic. There are more on the in-patient floor, but Angie meets every single patient as they are diagnosed. That’s 90 new patients a year, but includes all the patients who come for treatment from the previous years and check-ups from the years before that! Approximately 900 children, teens, and young adults are seen at The Melodies Center each year! Angie treats every single one of them as if they were her own. She feels their pain, revels in their successes, and holds them all in her heart. She is a major reason why we work hard all year to raise money.

Nick’s Round Table has raised money for the Teen Tech Room, and it is another huge need that we can’t wait to have filled. Teens and young adults with cancer are often in a transitional part of their life. Some are going through puberty, some are starting college, some are starting careers or life with a partner/spouse, but suddenly they are thrust into a world where they aren’t sure where they fit in. A teen/young adult’s life has not only been disrupted, but displaced.

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Nick’s Round Table L-R: Becca Abel, Angie Silipigno (Child Life Specialist), Katie Kelly, Sarah Olsen, Brittney Decker, Grace & Claire Isaksen, Rob Saba (Dir. of Development, Grateful Patients and Families at AMC)

Having this teen/young adult haven will give this specific age group a space to decompress and connect to their life outside of cancer. It can be a space where they can bond with others in their situation and hopefully feel the support we have for them and every other child diagnosed.

It was a busy year for us with families in need. Over $25,000 granted in financial assistance, $2,400 in gift cards for patients and families, $9,000 for Family Hope Bags, $2,000 in Nick’s Comfort Bags. This doesn’t include holiday support, magazines, DVDs, video games, arts & crafts, and anything else that comes to our attention. The time and effort that our board and volunteers put into making this all come together cannot even be counted. Board member Karen Patchell visits the clinic once and sometimes twice a week with Chloe our therapy dog and also to do yoga. The children absolutely love her!

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Amelia & Bella love yoga!

I couldn’t be prouder and more thankful for everyone who makes up our foundation. It’s important to sit back and absorb our accomplishments this year and since the beginning. Nick Cammarata and Luke Romano are surely proud of all we have done in their names.

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Thank you to everyone, and we look forward to continuing our mission in 2018.

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.

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!