I couldn’t let the day pass without sharing a story about childhood cancer awareness month. Grief is like muscle memory. Your body remembers as easily as the change in seasons. As fall comes, we begin to crave hot apple cider and donuts, the crisp air, and early nights.
This is the time when my most damaged muscle pines for what has been lost. That muscle memory kicks right in at the beginning of September. The first day that Stephen had to go to school by himself without his big brother. Their first birthdays separated, the first Halloween dressing up on his own, the loss of innocence, the pain that seeps back in as stealthily as the leaves begin to change.
Despite all we do to bring about change, it sometimes feels that not enough is being done. No matter how much good I am surrounded with and all the support and love that I am given, my heart still skips and flutters with loss when I think about Nick.
Like so many other families, cancer took away one of my biggest joys, one of my greatest purposes in life. And it just sucks.
There are times when muscle memory is a good thing. For anyone who has lost a child, every season and every anniversary brings the heartache back.
September is Childhood Cancer Awareness Month, but every day I don’t have my son. So every day we should work like hell to find a cure, give comfort, show love, and make a difference for a child battling cancer or any type of life threatening illness. That is the kind of muscle memory everyone should have.
Last night I finally watched Guardians of the Galaxy 2. I thought of Justin and how much he loved the comic book movies and wanted to see this one. Then I thought of milestones. Justin passed away on January 27, 2017. He wasn’t here for the opening night of this movie or for the rest of the many more coming out this year.
Justin would be going into his junior year. It’s another milestone that repeatedly breaks his mom’s heart. These milestones that hit us like a ton of bricks will continue for the rest of our lives.
Once the college graduations of Nick’s peers were over, I thought there would be a reprieve. However, then the jobs come, the weddings, and the babies. There will always be a milestone that will bring up the pain of losing my son to cancer. It doesn’t lessen the joy I feel for those who are living their lives, it just another hurt that I carry with me.
Looking at Justin’s beautiful smile, you know he was full of life. He loved his mother, his family, his books. Today, I remember Justin, because of all what he taught us, and also because of his potential that was cut short by cancer.
We cannot turn away from what children with cancer go through. We have to raise money for new and improved treatments that provide less side effects. We need to support the families whose lives have been split by this disease. And we absolutely need to support the parents and kids who have lost a member of their family.
Take action and spread the word. Much love to Justin, his mom, and family.
Everyone has a legacy. As parents we hope our legacy will live through our children. But as a parent who has lost a child, I have learned that our children create their own legacies and have their own paths.
Luke Romano’s Legacy lives on, because of the clear vision he had on how he wanted to live his life and how he wanted to be remembered. I am always in awe when our kids with cancer see beyond their illnesses, their fears, their deaths. Luke impressed me with not only his maturity, but his foresight to ask that our families join forces in order to help other kids more effectively as they go through their cancer journey.
Not many adults would look beyond the ego and see the greater good. Luke did and his legacy continues with providing amazing pillows to teens in the comfort bags. The Family Hope Bags are given to newly diagnosed patients so that their parents can focus on their diagnosis and not where their next meal is coming from when their children are suddenly inpatient at the hospital. His legacy continues by providing scholarships to kids to make the world a better place and raise awareness and increase empathy for teens and young adults about the emotional and physical effects of cancer.
I remember Luke today not because this is the day he passed away. I remember Luke today, because he reminds me of all the work that still has to be done. He gives me the strength to keep going, because he would have done the same. His legacy inspires us to never give up and provide support so that kids with cancer can live fulfilling lives the way they want to. So that they can grow their own legacy.
Thinking of you today, Lucas and hoping you and Nick are proud of what we have done in your memories. You continue to guide us.
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.
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 firstname.lastname@example.org
Thank you to our volunteers, our sponsors, and everyone who helps us in our mission.
Liam has had a long and hard battle. He has relapsed twice and had to go to Rochester for a bone marrow transplant. We are lucky in that Golisano’s Children’s Hospital is an option for transplants, and young adults, such as Kayla, who go to college in Rochester take it upon themselves to bring comfort bags to patients and visit. Kaya met Liam and helped him get through that hard time.
I first met Liam and his mom when he was inpatient at The Melodies Center in Albany. I walked in, and Liam was watching a cartoon show on TV. He was totally engaged in it, and so I talked to his mom for a bit about our kids, what Liam was going through, and just life. Parents need a break to take care of themselves, reset their frame of mind, and get fresh air. I remember never wanting to leave Nick, and the only time I did was if my husband was there with him. I felt like I had to do everything, and it wore me down.
There is nothing wrong with taking time to go for a walk, getting coffee with a friend, finding a quiet spot and breaking down. If we don’t take care of ourselves, then how can we be mentally and physically fit enough to care for our sick children and make critical decisions? It is not something a parent should feel guilty about and yet we still do.
As we spoke, I pulled out a Lego set, and BAM! Liam’s eyes caught mine, and his face split into a huge smile! Apparently I hit the jackpot. Liam loves Legos. It takes a small gesture, the touch of a hand, a hug, a gift, or a word of encouragement that can make a child’s day brighter. I also gave Liam’s mom and his sister some lotion and body spray. Nothing like some body care products to brighten a gal’s day! But to have something fresh and new to give hope is so important!
This is why we work so hard–to bring a smile, to give hope, to make a positive difference in someone’s life. Liam’s mom knows that these kids are the strongest, bravest, and wonderful fighters. This is a common theme that all the parents have said about their kids. They endure more than most grownups could. They are true heroes. Seeing other kids getting through their journey and thriving, the medical staff, and their faith helps.
Of course visits from friends and someone reaching out a helping hand can go a long way. What can you do today for someone you know battling cancer? Don’t wait until tomorrow or think that someone else is doing it. You don’t know how your caring gesture might impact that person. Show love. You may just save their life.
In June 2015 just two weeks shy of her fourth birthday, Isabella was diagnosed with cancer. She had to stay in the hospital for 15 days. When a child is diagnosed, many times they don’t get to go home immediately. The entire family is thrust into this foreign world, not knowing the language, and trying to find your way out of this nightmare.
Fortunately for Isabella and the children who are treated at The Bernard & Millie Duker Children’s Hospital Melodies Center, there are many different professionals who help. A child and their family will initially meet their oncologist, who essentially becomes like a part of their family. Then there is the child life specialist and the social worker who acclimate everyone to this new world, and the nurses who not only help with treatments, but soothe and encourage. Within a day or two of getting diagnosed, a family receives Nick’s Fight to be Healed Family Hope Bag, filled with essentials just in case of a situation like Isabella’s.
You meet so many people on a cancer journey that it’s hard to keep track. Isabella’s parents felt it was very important to keep life as normal as possible for their daughter. They have kept their family and friends close and have utilized support groups. Getting involved with Nick’s Run to be Healed with Isabella being 2016’s Nick’s Warrior has given them another connection to amazing and supportive community members. They explain that it’s important to remember to enjoy and embrace all the little things in life and to celebrate and create as many wonderful memories with your family. Sometimes life gets so hectic, Isabella reminds us that at any time, our lives can change.
Her family believes that staying positive and keeping routines help make every day feel “normal.” It’s OK to cry, scream, yell, laugh, smile, and enjoy life. It’s all part of the journey.
They know firsthand that cancer can turn your life upside down, now matter your age. When you watch a child go through treatments, pokes, scans, and take numerous medications, it makes you realize how strong they are. Isabella’s parents want others to know that kids are resilient and thrive on the positivity and love around them. Cancer doesn’t define them. It is only one piece of what makes each one of our children extra special.
If you want to join Isabella for Nick’s Run to be Healed 5K, it’s on Sunday, September 25. Her team is Bella’s Believers. Go to www.fighttobehealed.org for more info.
I first met Sammie three weeks after I lost Nick. We had planned a fundraiser with the Mayo, Romano, and Sagnelli families at the 99 Restaurant. Nick was excited to get involved and give back. Then he suddenly passed. I was numb and in pain. When I walked through the door, I saw this darling little girl with tight brown curls circling her round face. She had happy eyes, and we connected from that day forward.
I have been through a lot with Sammie and have seen her ups and downs. My husband and I just brought Stephen back to college yesterday, and I have to admit, I was very sad and need a day or two to get myself back together. Plus, I think of Nick and the fact that he will never go to college.
So I wanted to focus on a survivor who would now be attending college, and I thought of Sammie, in addition to so many others who I will feature soon. Sammie wrote her thoughts about what we need to know about children with cancer and what gives her hope. It was so well-written and honest that I’m including her words.
Janine: What do you want people to know about children battling cancer?
Sammie: I want people to understand that the children who battle cancer, can and (God willing) do survive. I understand we often hear about children passing away and dying from cancer, and I’m hopeful those statistics will change for the better in the future. But we need to change our expectations of what a childhood cancer diagnosis means and stop associating it with death and sickness. We need to change our expectations of what a childhood cancer survivor looks like.
I was a child who survived cancer, became healthy again, returned to sports, began attending school again, whose hair grew back, graduated high school, and now will be attending college. Often friends and teachers are shocked hearing that I am a childhood cancer survivor. I am a very talkative and an extroverted person. When people find out they will make comments like, “I would have never known you are …,” their sentence trails off, but I know what they mean. They are surprised that I’m “normal.” To be fair, no one would know I survived cancer when I was 9 years old. I don’t walk around with an “I had Cancer” t-shirt. I feel like they expect a really introverted, quiet, sort of mysterious person as oppose to a happy and bubbly one. It’s important to understand that every survivor wears their trauma differently.
I understand my previous illness may be unknown to a stranger or at a first glance. But I am more than my illness. It does not define me. I wish people would really understand that childhood cancer survivors, or even fighters, are so much more than their illness. So much is constantly changing in a child’s life, and cancer is something they will move on from. I wish more people would know that ‘cancer kids’ have the possibility of returning to “normal” life and planning for a future.
Another incredibly important thing I wish people knew about children who survive cancer is that the pain isn’t “less” because it happened to a person when they were younger. It has to be understood that the childhood of a childhood cancer survivor is much different than someone who didn’t have cancer. I’ve discussed this with a therapist and the best way to describe it is comparing it to a tree. Imagine a full grown tree. The tree represents your entire life. The bottom or roots of the tree is where you started growing or your youngest age. As you get older you move up the tree. The earlier trauma happens in a person’s life the more it affects how the tree grows, or how you shape your life and the person you become. Because cancer happens to a person as a child does not mean it changes them “less” than an adult who survives cancer. It actually affects them and who they are as a person more so. And because I get asked this question a lot, yes I do remember my cancer, chemo, and surgeries. I for the most part I remember everything I haven’t already suppressed.
Janine: What give you hope/support to get through each day?
Sammie: At times it can be either really difficult or incredibly easy to find hope to get through the day. There are days I feel empowered and strengthened because I overcame my illness. I feel like I can do or be anything I want. On those days I feel like I am on top of the world, and on other days it feels like the world is on top of me.
I do suffer from PTSD as a result of my cancer. On some days it feels crushing, impossible, and confusing. It is very easy to get stuck on pointless questions of “Why? How? What?” Some days you have no choice but to sit with your thoughts and feel the pain all over again in order to let it go for the moment. Whenever I go for a checkup or a routine scan, anxiety usually accompanies it because I fear my illness returning. If I’m having a bad day I’ll calmly tell myself, “Sammie… You have air in your lungs and your heart is beating.. .You are alive… Cancer may have taken things from you, but you have today… and tomorrow… and the rest of your life….”
Although some days are nasty and feel unbearable, I take comfort in knowing I am incredibly strong. I find hope in the fact that I survived, and my struggles have made me incredibly tough and resilient. I have much more to live for, and I know I am capable of more than I currently believe.
Although my life was completely changed by surviving cancer, I find hope in knowing that everything I’ve been through is all in God’s plan for me. Things were meant to be this way and happen the way they did. I have hope in knowing I can love myself despite the physical and emotional scars cancer gave me. I used my cancer to make myself more passionate, ambitious, and determined in pursuit of my goals.
I guess you could say my biggest hope comes from the fact that I am alive.
For the next few weeks, I’m going to be sharing many stories about my young friend, Nick Rychcik who is battling a rare and aggressive form of cancer. He is the warrior for this year’s Nick’s Run to be Healed 5K on Sunday, September 28. Though he may not know it, Nick is an inspiration to many.
Jason Maguire who was a friend of my Nick and is heading back to SUNY Plattsburgh for his sophomore year wanted to get more involved with the foundation. Since he loves baseball and Nick Rychcik loves baseball, I asked Jason to go shopping. He did a great job with the baseball theme and also gave Nick his baseball bat from a previous tournament. Nick, an avid Yankees fan will have to ignore the Boston Red Sox in this photo!
Jason Maguire holding the bat he gave to Nick.
My plan was to get these items and some balloons to Nick before he came home tonight after being at Sloan Kettering for a trial treatment that will hopefully beat this monster called cancer.
I stopped at the store to get some fun gifts for his four siblings. At the checkout line I had a couple movies, a nail design set, nail polish, a board game, Lego set and a princess journal; something for everyone. A woman behind me casually said, “Someone is getting spoiled today.”
I paused and thought of the irony of this situation. I wanted to tell her that the children receiving these gifts were dealing with the constant threat of losing their sibling, but I didn’t want to sound sanctimonious. However, it made me think of people’s perceptions about what they see around them. She may have been thinking that I’m spoiling my children and they’ll grow up to be brats, while I’m thinking that these poor children have been separated from both their parents for over a week as they care for their son who had surgery. Even though their aunts, grandmother, friends and relatives have tried to fill that void, nothing can replace having your parents there when you are scared or lonely.
I thought about Nick’s parents, who worry about whether or not this treatment will work, and also fret about not being home to help their oldest daughter get back to college or school shop for their other children.
I overheard another woman in the library say how she couldn’t wait for her children to get back to school so she would have her routine back. Every parent whose child suffers with cancer wishes to have their routine back. They wish they had the chaos of not getting their house cleaned because the kids are running around making a mess.
A cancer diagnosis changes our perspective. Hopefully as people become more aware of what a family goes through their perspective will change, too. Yes, we brought some fun gifts to a family who is missing their brother, nephew, and grandchild, but they cannot be spoiled, because the fear of losing that person overshadows a lot of the joy of receiving gifts. It’s a distraction that hopefully relieves some stress.
Thank you to Jason for reaching out and helping a young boy find some joy during this tough and long journey. I hope the women who made these comments, which weren’t mean or misdirected, have a change in perspective if they ever read this blog.
Life isn’t always what we perceive and I’m thankful to be reminded of that today.