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!
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!
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.
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.
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.
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.
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.”
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.
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.
In 2008, our family supported Luke Romano at a Chair-ity event at Orenda Elementary School. It was an amazing fundraiser, and we purchased a chair that still resides in our house. Luke helped my husband, Lucas, coach soccer for our son, Stephen, and Luke’s brother, Marcus, who were in the same grade.
Luke was one year older than Nick. There are so many connections between the Romano and Cammarata families that when Nick was diagnosed and I told Annette and John, they were floored. I remember Annette crying with me on the phone and they immediately showed support by giving us advice and taking Stephen when we were at the hospital.
Luke and Nick hung out a few times. I so wish I had a picture of them together. Luke needed to go for a second bone marrow transplant, and he said he would if Nick did. Nick had every intention to do just that, but passed away before he had a chance. Luke would go on to battle for 3 more years and he passed away on August 28, 2011.
I still remember going down to the hospital knowing that Luke’s time was close. Lucas and Stephen came down and there were so many people there wanting to be in Luke’s presence. Before Luke passed he told his parents that he didn’t want a separate foundation. It didn’t make sense. He wanted to join together with Nick’s Fight to be Healed and support our mission.
His family has done just that. Luke’s Legacy organizes and supports our Family Hope Bags, and they provide two scholarships for students attending Niskayuna and Shenendehowa High Schools who plan to study equestrian science. Perhaps Luke’s greatest impact is Luke’s pillow that complements Nick’s Comfort Bag. When Luke was diagnosed, his aunt gave him this cozy down pillow, and Luke would always travel with it to the hospital.
That pillow is the favorite part of the comfort bag according to all the patients who get one. Luke battled cancer for seven years, relapsing four time. He lived a lifetime in his 18 years, but it will never be enough. The world lost such a beautiful and dynamic person when Luke joined my Nick, but his legacy lives on, and his impact far reaching.
Annette shares that this journey is for the entire family and although there are commonalities, each child’s journey is unique. Each family member has needs, and we need to provide a wide array of support–physical, medical, financial, emotional, and social.
Their hope is that we will be a voice and advocate for high quality, comprehensive support for families affected by childhood cancer. Being part of Nick’s Fight to be Healed helps the Romano family continue Luke’s Legacy.
Our children live on in our memories, the friendships and bonds they have shared, and the volunteers who choose to dedicate their time in their memory.
Thank you to everyone who read their stories, volunteer, donate, and give back. You have truly have had an impact.
How can a child remain so positive when they are going through a cancer treatment? That was one of the things that amazed me about my son, Nick, when he was so ill. Even when he was so fatigued and couldn’t do anything, he still had a smile on his face. It seemed very important to him that everyone else was comfortable and doing all right.
Emily looks at life with optimism and sees goodness, instead of what may hurt. Knowing that the treatments will make them better can change a bad experience into a good one, but it’s still painful. Our children still cry, and they need to know that it’s all right to show pain, anger, frustration, and confusion. These emotions only cause more disease if they are bottled up.
But when your child smiles at you while in clinic, you can’t help but smile and be amazed at how strong and brave they are.
Emily’s family knows that cancer can take a lot out of a child, it can change their demeanor, and kids need extra amounts of love and understanding when this happens. Being showered with love in these tough times helps immensely. In addition, the generosity of people and groups help the patient and the whole family.
Parents follow their sick child’s lead. Right now Emily is in her maintenance phase. She is still getting medication, but she is on the road to being healed. That is a reason in itself for her to be positive, and when her family sees her smile, I’m sure they smile right back at her and feel blessed.