Holidays

Woke up this morning not really excited about Thanksgiving. Part of me wants to stay in bed and avoid the day. Why? I think back on my dreams. Nick visited. Reality hits. Oh yeah. Sadness. No matter how many years go by, sadness, regret, loss, and pain will always be there on a holiday.

I think about the families who are having their first Thanksgiving without their child. For the first two or three holidays, I set a plate at the table for Nick. I needed that space for him to know that we would always love him and he was remembered.

I also had a candle burning near a photo of him and my dad welcoming them. We have Thanksgiving at my sister, Michele’s house. She gave me that space and knew we needed it. That is key to being with grief, and I love her for that.

Then after a while I didn’t need that space. It wasn’t because I forgot Nick or got over the loss. Neither will ever happen. I learned that his place is within and around me. The photo and candle stayed adding a photo of Luke’s dad when he passed.

Now I think of Nick. I remember stories of him, his funny faces, and smile.

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His love of cream puffs and Grands. The joy all the kids felt being together. It’s not the same. It never will be. So on my holiday mornings, I spend time with Nick. I write to him. I be with him as he is now. When I can come the holidays like that, then I can be with what is. I can find joy in the moment, right now.

Just like I make sure Nick and I have that special time together, I do the same with Stephen, Luke, and my family.

If you are missing your child today or any loved one, give yourself the time to be with them. Take those precious moments to feel their light and let your feelings flow. Then be with those who are sitting around your Thanksgiving table and soak in their love.

Wishing everyone a peaceful Thanksgiving.

We are There for You

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Know we are here for you.

The uncertainty of cancer can often be the largest stressor when your child is diagnosed. Not knowing if the treatment is working, how you will get time off from work, what the prolonged separations will do to your other children or your family unit, or where the money will come from to pay the growing bills.

Within a month of Nick being diagnosed, my friend Jen at the library said that Gina from the Catie Hoch Foundation wanted to give us gas and food gift cards. I was floored that someone would want to help a total stranger in such a basic way. We were OK, and I didn’t think I should take it when others probably needed it more.

Gina came to the library and gave me the cards. I learned something that day. Sometimes people know what you need more than you do. I accepted them, thanked her, and knew she was there if we needed anything else.

I used the cards when the daily trips to the hospital and doctors took their toll. It helped us financially, but it did more than that. Her outreach gave us that sense of community, of being cared for, of being seen, and comforted.

I never thought I would be in the same place that Gina was with her foundation. Yet here we are. I have always remembered that sense of camaraderie I felt from someone who had been on the same road as me. One of the first services Nick’s Fight to be Healed provided was financial assistance to families. Just in the last month we have supported families with gift cards for food and travel. We have paid to keep the heat on and for mortgages.

These are essentials that everyone needs to remain healthy, safe, and secure. Providing these services reduce stress, but these acts do so much more. When we send a gift card with a handwritten note, we really mean it when we say we are here for you. In addition to assisting with the financial details, we are a shoulder to cry on, an ear to listen, arms to wrap around you when the journey feels impossible. We are kindred spirits who have been where you have been. And even if we haven’t, as people fueled by love, we open our arms to you.

It takes more than medicine and stress reducers to get a family through a cancer diagnosis and back on the road to life. It takes people who will dig deep no matter how painful to show our families that they matter, they are cared for, loved, and valued. That they are human beings going through one of the hardest times in their lives and sometimes just need a simple hug. Or a tap dance and kiss from Chloe, our pet therapy dog.

I am so very proud of what our foundation does, as well as what the other foundations do to give back and raise up our beautiful families. Today I send out a big hug to everyone who needs it and an even bigger thank you to the selfless volunteers and staff who give their hearts, because they simply couldn’t do it any other way.

Milestones

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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.

Luke’s Legacy

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.

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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.

To All the Warriors

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. 

Miss you, Nick ❤️

Smashing Cancer!

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Regan and Abby

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!

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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!

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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!

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Karen Patchell, didn’t have Chloe with her, but rather good friends, Kathy and Craig!

Love Finds a Way

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.

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2015–Justin joined us for our annual donation to The Melodies Center. Pictured with me and Dr. Gozman.

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.

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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.

Sammie on Surviving Cancer

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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.

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Sammie gave back during and after her cancer journey. It heals and helps others fighting the same battle.

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.

What Makes Them Amazing

Featured from Left to Right:
Back Row: Stephen Cammarata with a photo of his brother Nick, Sammie Sagnelli, Kassidy Krenzer, Kirstin Hodges,
Marcus & Jaclyn Romano with a photo of  their brother Luke
Front Row: Zach Dymond, Ben Mayo, Nick Bowen, Nick Heald

Two years ago I started interviewing young adults who were either in the midst of battling cancer or had cancer as a child and were still dealing with the physical ramifications. In addition I interviewed the family and friends of Luke Romano who lost his valiant battle with cancer and I wrote about my son Nick who was my link to the world of cancer after he was diagnosed. 

Every young adult featured in this book gave back to the community and other cancer families through fundraising, sharing their experiences, offering a shoulder to cry or lean on, or leaving an inspiring legacy. Their journeys laid the groundwork for my latest book: What Makes Them Amazing: Inspiring Stories of Young Adults Fighting Cancer

From each young adult, I have learned that there is more than one way to get through cancer, to live with loss, to go on, or to give back; laughter and love can get you through almost anything; and there is always HOPE.

My wish is that everyone who reads this book will realize that “Nothing is Impossible,” as Nick told his little brother Stephen and that you will give a copy of this book to anyone battling cancer.  You don’t have to have cancer to appreciate the lessons these young adults share. You only need an open heart and mind.

Proceeds from the sales of this book are donated to Nick’s Fight to be Healed Foundation.  A copy of this book will be given to every pediatric cancer patient being treated at The Melodies Center for Childhood Cancer and Blood Disorders at Albany Medical Center as part of our mission to help children heal. 

If you’d like a copy of this book or wish to attend upcoming book events, please go to www.fighttobehealed.org for more information.

These young adults touched my heart and I know you will be amazed.