Today is 9 years since Nick was diagnosed with cancer. 9 years since his own independence was taken away and then his precious life.
Contrasts have been a major theme for me this week and it’s been tough. I think about all the children and young adults who are battling cancer right now. Some have just found out that their lives have changed, some are healed, some have relapsed one, two, three times, some are away getting transplants, and some are saying goodbye to their families.
For each and every one of them, cancer has taken away their freedom to live a happy and fulfilling life. It has yanked them off their path and thrown them into a war. It has irrevocably changed their lives and their families.
It breaks my heart and is difficult to live with.
But then I see the joy that our kids find through the tragedy, the loss, and the restrictions. They understand what they can no longer do. But instead of letting it defeat them; instead of allowing cancer to take away their independence, they fight and treasure what they are able to do.
I have often been impressed by their tenacity, altruism, and determination. I have cried from their loss, but refuse to let it break me, because they don’t give up.
Today I remember my boy, Luke, Justin, Reese, and all the other children and teens who never gave up, but fell in battle. I honor those who are fighting so hard like Zach, Markel, and everyone else in the throes of their battle.
Today we remember our freedom, and I thank everyone who keeps us safe. My heart and love goes out to those who fight a different battle every day of their lives.
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.
On Sunday, March 19, Nick’s Round Table’s fundraising chair, Sarah Collins, organized a fundraiser at Smashburgers in Clifton Park. She and other members worked hard to spread the word. Regan, who is currently battling cancer and Abby, who is done with her treatment joined Nick’s Fight to be Healed Foundation for their first fundraiser at Smashburger’s in Clifton Park. This was the first time Abby ever had a burger, and it would appear that the Smashburger Kids’ meal was a success!
My husband, Luke, and his U12 Clifton Park A-team had just played a soccer game and came in all hungry and ready to chow down for a great cause!
Siblings were happy to join in!
167 people joined us during this fundraiser. Smashburger donated $2 for every person who ordered an entree or kids’ meal. As a benefit they had a 1/2 off milkshake special and 71 people took advantage of it! I heard they are the best in the area!
Thank you to Leo and Sue Butera for your support and donating $334 to Nick’s Round Table that will be used to support local children battling cancer! Thanks to everyone who came out to eat!
I met Sammie Sagnelli three weeks after I lost Nick to cancer. She had been fighting a hard battle, and her hair was short and curly circling her angelic face. We met at the fundraiser that Nick was supposed to be involved in. This young girl became a part of my life, and her vibrancy and zest for life helped me through some of my darkest moments missing my boy.
When a child hits a milestone, whether it’s a day cancer free or a week, a month, a year, 5 years or 10 years, first I want to fist pump the world and say, “Thank goodness!” Second, I think about that child’s potential and all she has to offer to the world, now that she is healed.
Sammie went on and continued to play softball through high school. She has always loved to bake, and I remember when she was on a dog biscuit baking phase. My dogs enjoyed them! Sammie also was incredibly involved with Nick’s Round Table, and her knowledge and understanding of what kids needed during treatment enhanced what we did.
Sammie is a voice for others and isn’t afraid to speak up and share how cancer affects a child not only while they are in treatment, but after. Children may not realize side effects until they are older. And they aren’t just physical. Emotional side effects play a huge part in a child’s battle with cancer and can take a lifetime to heal.
Sammie has never been afraid of being herself and sharing her time with kids who need support. Her love of Katniss and the Hunger Games is still probably very strong, and I think she can relate to the idea of being forced into something that you don’t want to do, but then you realize that you are stronger than you thought you were. Others see that and view her as a role model.
That is what Sammie has become. A role model for other kids who are battling cancer. To look at Sammie now, you would never know how sick she was as a child. She gives us hope, she spreads joy, and is making the world a better place just by being here! Now a college student, Sammie is living the life that she wants and deserves. Cancer can never take that away from her.
So happy that you have reached an amazing milestone, Sammie! I love you and am so grateful to have you in my life! Maybe next time I see you, you’ll have made some yummy desserts! Hint, hint!!
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.
I still remember interviewing Nick Bowen and his mom, Carol. At age 11, Nick was rushed to the hospital after he passed out in the tub. He was diagnosed with a brain tumor and stayed in the hospital for weeks. Carol said, “All I brought with me was my pocketbook and my Bible.”
We don’t plan to be told that our child has cancer and not be able to go home. That was how the Nick’s Fight to be Healed Family Hope Bags developed. We thought, What would a family need for an emergency overnight stay at the hospital? Ideas for what this bag would contain came from an amazing warrior, Luke Romano. Luke dealt with cancer for seven years, so was an expert on preparing for hospital stays and what a family needs. Usually one parent has to stay with their child, so the Family Hope Bags are geared to support both. The “Red Bag” is delivered by the child life specialist or social worker when a child is diagnosed and inpatient.
There are essentials like shampoo, conditioner, body wash, lotion, hand sanitizer, hair brushes, toothbrushes, toothpaste, deodorant, hair ties, laundry detergent, and chapstick.
Being in a hospital and facing cancer is devastating, so we focus on making others comfortable. Having cozy socks, eye pads to block out the light, headphones to listen to music, a journal to write your thoughts and keep track of doctor notes are all included.
Hope and the connection is brought about by including a letter from a local family who has gone through what this family is now going through. We know how scared our families are and to have hope given by someone who have been there is priceless. This year we also had kids from Niskayuna Elementary School writes cards of comfort that are placed in every bag. They are thoughtful and compassionate notes.
Family Hope Bags are our most time consuming project, but it is also the most worthwhile. Besides the wonderful staff at The Melodies Center, these bags are the first line of comfort to get a family emotionally, financially, and physically through cancer treatment.
Everyone calls them the “Red Bag.” Surrounding this black front with white logos is a red duffle bag that families can carry back and forth to the hospital. Our wonderful sponsors donate gift cards to Starbucks, Dunkin Donuts, the cafe at the hospital, Panera, and the Recovery Sports Grill provides gift certificates to their restaurant. We couldn’t do this without them.
Annually, the Southern Saratoga YMCA has a drive to collect essential items and it makes a huge difference.
In addition to these initial gift cards, Nick’s Fight to be Healed provides gift cards each month for ongoing treatment that Angie, the clinic child life specialist, and Courtney, the social worker, hands out to families. Reducing stress is key to healing.
It takes hours of shopping, separating, copying, folding and packing these bags before they can be brought down to Albany Med. Between 70-90 bags are given to families each year. That means up to 90 children are newly diagnosed with cancer each year just in our area. We have a lot of work to support our families and we do the best we can.
Teens from Nick’s Round Table, along with their amazing leader, Annette Romano, shop and pack all these bags. It’s a daunting task, but they do it with joy on their faces, because they know how much these bags mean to families.
It takes more than medicine to heal a child. It takes love, in-hospital services, comfort, and hope. Nick’s Fight to be Healed Foundation does this and needs your help to continue.
If you would like to donate gift cards from Target or Walmart to purchase supplies for these bags or gift cards in $25 increments to Starbucks, Dunkin Donuts, Panera, or CVS, please mail them to:
NFTBHF, Family Hope Bag Program, PO Box 217, Rexford, NY 12148
If your company would like to sponsor this program, please contact Annette Romano at email@example.com
Thank you to our volunteers, our sponsors, and everyone who helps us in our mission.
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.
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.
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.
This past weekend was the 4th annual Purple Tie Affair benefiting Nick’s Fight to be Healed Foundation and The Leukemia & Lymphoma Society through Team in Training program. It’s always a night of celebration, good food, and dancing, but at this event many hearts were bursting.
In the beginning of the evening, we held a special cocktail hour that gave those affected by cancer a chance to share their story. I spoke about our foundation and welcomed everyone to enjoyed themselves, but asked that tomorrow everyone think about what they could do to help a child beat cancer. We all have a special light or passion within ourselves that we can use to make the world a better place and to make a difference for someone battling cancer.
Purple Tie committee and Anthony Yevoli LLS Boy of the Year making a fantastic speech.
Nick had a huge heart. He was such a love bug, compassionate, and enthusiastic. He had a zest for life that was infectious. When I lost Nick instead of sealing off my heart to life, I opened it and reached out to help others with the assistance of my friends and family. I can’t change what happened to my son and losing him will always leave a gap in my life. But by opening my heart and taking on this mission to help children with cancer, Nick has brought more love into my life. He has guided me to children and young adults to make my heart soar with their bravery, determination and simple love of life.
Some of the amazing volunteers and board members of Nick’s Fight!
Today I went to visit my friend, Justin, who has been in the hospital for a bit of time with complications from his treatments. Justin is the ultimate warrior. He has had a rough road, but he remains brave and true to his desire to be healed. Justin was a bit low when I arrived. He looked tired and was curled up in his bed.
I sat and we began to talk about all the fantabulous Marvel comic movies that have been made throughout the years and how they all thread together. Justin knew the characters, the connections, and what movies were being made and were coming out this year. As he spoke, his eyes lit with enthusiasm and true interest. Then our conversation continued onto Greek, Roman, Norse, Egyptian, and Irish mythology. Justin is a powerhouse of knowledge and as anyone knows I love Marvel comics and mythology. When we talked about the Renaissance, I knew we shared something special. By the time I had to leave, Justin was sitting up in bed drinking a coffee coolatta!
I wish that Justin had never gotten cancer. The same way I feel about Nick and every child who has been diagnosed. But if I would have sealed myself off from this world, never to be around children and young adults who are battling, I would have never met Justin. So much of what Justin loves is what Nick loved, and he made me so happy to sit there and talk about what we are both passionate about. Spending time with Justin today made my heart explode with joy!
I hope our visit helped him too. It’s hard being in the hospital every single day when you only want to be at home and with your friends. Justin is a true knight that King Arthur would surely have had at his round table, and when he is better, I hope that he will join Nick’s Round Table.
Thank you, Justin for chilling with me today! Feel better!
On December 22, 2016, our board of directors from the foundation and Nick’s Round Table officers took a break from the holiday craziness to get to what really matters.
We traveled down to the cozy Amedore Room that is a safe haven for families whose kids are in patient on the 7th floor.
It provided a warm atmosphere and the perfect place to be surprised by my little darling Bella, who is one of our strong and incredible Nick’s Warriors.
Bella helped us to present a check for $40,000 to help fund the vital child life specialist position that Angie Silipigno holds in The Melodies Center.
I say this position is vital because Angie and the other child life specialists and social workers play a key role in healing the whole child during their cancer journey. A bond that runs as deep as blood forms during this time of uncertainty, pain, fear, and life disruption.
It takes a special person to be able to go beyond the call of her job and open her heart to children who suffer so deeply. But in doing so, Angie teaches kids and their families that love can heal, open communication can soothe, and hope nevers ends.
For 8 years, we have supported this position, in addition to the myriad of others services that are designed to reduce stress and aid in the body, mind, and spirit healing.
So as 2017 begins and we start raising funds to continue these valuable services, we take a moment to thank everyone who supports us in our mission. We thank Angie, Courtney, Lisa, all the nurses, doctors, and dedicated staff who heal our very sick children, and we remember with love our children who have passed from this horrible disease.
Healing children with cancer is our driving force, and we look to our community to keep us on our path.
Happy New Year and best wishes for healing, lots of love and hope.
Today is Halloween. It’s the end of my rollercoaster month of ultimate joys and tragic sorrows. 8 years ago was Nick’s funeral. The timing may not have been the best, but it’s never a good time to bury your loved one.
I remember my nieces and nephews dressing up with Stephen. I walked with them and right outside my house a man told the woman that the boy who lived there was buried today. He couldn’t believe we would be celebrating Halloween.
A part of me wanted to tear his eyes out, but then my heart broke a little more because he couldn’t understand. He couldn’t know that Halloween was our favorite holiday, that we actually dressed up all year long play acting and storytelling. He didn’t know that someone could be in intense pain and still know joy.
I didn’t know it either and it has taken me a long time to have this breakthrough. This weekend was the third session of my training to be a Baptiste yoga instructor. Of course there’s a lot of yoga practice, but there is also meditation and self-inquiry through journaling.
I journaled about how I have often felt unworthy or undeserving of happiness because of losing Nick. How could I be happy when my son was gone? What could I have done to save him? Self-doubts, feelings of unworthiness and guilt have plagued me for a long time.
This weekend dredged it up and came through while I sat quietly. But something in me shifted. I didn’t want to carry that heavy brick of guilt or sadness. I put it beside me so that I didn’t look at life through this grieving filter. Yes my son died, yes I will always and forever miss him, and yes some days I can’t do a damn thing, but I am worthy. I am happy and can live my life.
Missing Nick and feeling that sadness will creep up on me or slap me in the face like it did today. Howver, this change in my perspective shifted my relationship with Nick. We are forever connected, and tonight on Hallow’s Eve, the time between times when the veils of our worlds are thinnest, he will be celebrating with me.