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 ❤️

Courage

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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.

 

LukeStrong

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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.

Together with Teagan

teaganfinalI first met Teagan and her family when I ran in her family’s fundraiser, which was a run up in Saratoga. It started a relationship that has lasted numerous years. When her parents, Juergen and Holly, decided not to do the run anymore, they jumped on board with Nick’s Fight to be Healed Foundation to help organize Nick’s Run to be Healed. Juergen’s company, Hound Dog Graphics, has been a continued sponsor. After the 7th year of Nick’s Run that was on September 25, 2016, they have become an integral part of this event.

What I love the most about families with cancer and especially families who create fundraisers or foundations is that ego doesn’t exist. Yes, we want our child’s name to be included in a name of the event or the foundation, or noted in the room we raised money to build, but that is so our child’s name is kept in the forefront. It keeps their spirit strong in our mind and close to our hearts.

But when it comes to helping a child in need or supporting another fundraiser or foundation, we come together as a single unit and do what needs to be done. It gives me hope that different people from any walk of life can still come together for a common cause for the good of all.

Teagan has not only had to deal with cancer, but also with developmental and medical concerns. Yet she is like any other 11 year old. She wants to enjoy everything she can and be with her family. She has had so many obstacles, but she doesn’t complain. She accepts who she is, what she has to deal with, and she lives her life from that point, from what is. How freeing is that? She doesn’t have to waste energy on what she wants to be. We can learn so much from our kids and connect with our own inner child if we would just listen to them!

Teagan is her family’s hero. I know she inspires her brothers, as I see how wonderful they are to her. Together with Teagan, her family has been through so much. For 9 years, Teagan has been cancer free. It hasn’t been an easy road, but her family has been right there beside her.

Go Get ‘Em, Rachael!

 

Rachael is a powerhouse of energy and one of the biggest supporters of her young adult cancer community. From the start of her diagnosis, even before Dr. Kanwar explained anything to her parents, Rachael wanted to be included. She needed to know everything about her disease, and she didn’t want it sugar coated. She was 16 years old and was ready to fight. Rachael was more concerned with comforting her parents and insisted on being the one to tell her little brother and all her friends. She took on that responsibility and always thinks of others before herself.

This take charge attitude has served Rachael very well. In addition to it helping her heal and be three years in remission, Rachael took on the responsibility of raising money and awareness for children and young adults battling cancer. Since Rachael was diagnosed, she has started a fundraiser called Trending 4 Fashion. Not only does this event currently raise money for The Melodies Center, but it also gives children an opportunity to dress up and walk the runway. They are often paired with the staff at the clinic, which builds and even deeper connection and allows everyone to let loose a bit.

Rachael knows what she wants in life, she knows that cancer has changed her path in life. Here are her words:

Most importantly, I want people to know that everyone’s fight is different. Even though two people may be diagnosed with the exact same diagnosis does not mean that those two people will handle it the same way.

Personally for me, I never wanted to be looked at like a victim. I never wanted people to feel bad for me and feel bad for what I was going through. Obviously being diagnosed with cancer was one of the hardest things I’ve ever been through, but what I continuously told myself was “it is what it is.” I found that there was no point in harping on the fact that it happened, because at the end of the day it did, and the only other thing left to do was fight. I tried to focus all of my energy and thoughts on that fight by taking one step at a time, getting through those eight hours of chemo and not thinking about the next day until it came.

And while I say all of this and truly mean it, that does not mean that I never had “bad days.” I’m still human, and I was still dealing with something that literally changed my life forever. But with that being said I would never take back what happened to me. Being diagnosed helped me learn who I truly am and who I want to be. It taught me lessons at such a young age of what is truly important in life. It brought me to Ithaca College where I’ve made the best of friends, it’s brought me many opportunities that I am forever thankful for and has brought me to meet and get to know so many other survivors that are truly inspiring.

 

While I have now been cancer free for almost four years, the support from my friends, family and community both while I was in treatment and even now, four years later, is truly what has given me strength and hope. I would not have been able to make it through without those people who never let me down and never let me forget to fight.

Thank you, Rachael, for taking a devastating diagnosis and paying it forward to those that helped you. Not only do you help the clinic, but you empower others going through this battle to never give up. You are truly a role model and an inspiration to so many.

 

 

Never Giving Up Who She Is –Kacey

kaceyfinalI met Kacey when she was in rehab in Albany Medical Center. She had been in the hospital for months, and because of the intense chemotherapy she needed to be healed, she lost the use of her legs.

I did mention that Kacey is a dancer, right? Cancer never lets an opportunity go by to steal away a person’s identity. It has a tendency to take away what that person loves the most. It strips you down to your bare soul, and hopes that you never get back up. If cancer was a criminal, it would be serving endless life sentences for what it has done to our children.

Identity.

Kacey’s idea of who she was, what she wanted to be, how she would play out her senior year was all changed when she was diagnosed with cancer. Suddenly this wonderful, young woman had to not only learn to walk again, but before she could do that, she had to be able to sit up and stand. It took months and months of hard work and determination. Being a dancer, Kacey is used to hard work and grueling hours, but this type of training tested every belief and bit of confidence she had in herself.

The hardest part about her journey was that she wasn’t home. When Nick’s Fight found out that Kacey couldn’t go home until she had a wheelchair ramp, we went into motion. We rented one with the support of The Catie Hoch Foundation and Maddie’s Mark Foundation. The ramp was ready, but Kacey still wasn’t healthy enough, but she kept working on being able to stand.

When we realized that she would need the ramp for a longer period of time, we purchased the material and her family and friends built the ramp. Finally Kacey was home. What a beautiful sight!

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Kacey sets her sights on goals, and she doesn’t let anything get in her way. I have learned that this is who she is. She wanted to walk across the stage at her graduation. Guess what, she did.

She didn’t have to redefine who she was. Kacey already knows that she is a determined, hard-working, and generous person. Kacey just found other ways to express who she is. Now Kacey is driving, walking, and volunteers for Nick’s Round Table. She has shown us that giving up just isn’t an option. If you want something bad enough, have a great support system, and stay positive, you can do anything.

Markel–Living Life Her Way

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Imagine being in the midst of your college life, finally reaching toward independence, figuring out who you are as an individual, having fun meeting new people, and suddenly you feel that something is wrong. As an athlete, Markel was in good shape, but she began to feel ill and out of breath.

Now imagine that she is immediately thrust into a world of cancer, horrid medicines, no longer attending classes, and has to depend on her family once again. Her brush with college life and all the fun and self-discovery that goes with it has been shattered.

But Markel now has a new path of self-discovery. Yes it’s one she never would have thought to venture down, but has done so with her head held high, with a positive perspective, and always a hand reaching out to help another child, teen, or young adult battling.

I always see photos of Markel giving back with fellow cancer survivors like Rachael Murray and her Trending 4 Fashion show, or I see photos of her at the clinic with other survivors like Dante or Justin. Her smile makes you feel like everything is going to be all right as she gives you a big, warm hug.

Markel has had her ups and downs with her treatment. The complications have been numerous, including infections, seizures, and allergic reactions to transfusions. Markel was in remission, but in June 2015, she relapsed and on October 7, 2015 (which is Nick’s bday), she had a bone marrow transplant. Even out in Rochester, Nick’s Fight supported Markel and her mom and volunteers visit. Markel’s final biopsy showed no leukemia or Philadelphia chromosome present!

Markel knows that the support from staff at The Melodies Center, family, friends, and new cancer family friends helped her get through. Her family’s faith gave them the strength they didn’t know they had.

So where does Markel go from here? Children are extremely brave and strong whether they are 1 or 20. Markel knows that help is needed. Advocacy, funding, research, and education are essential for finding cures and making treatment less invasive to reduce long-term side effects.

Along with taking college courses, Markel takes action by volunteering for St. Baldrick’s and other events that raise money to help children and young adults fight cancer. Markel is part of our world’s future. That thought makes me smile very brightly, because I know we’ll be in great hands.

What Brings us Together

News about the Gillette Carnival has been flying around social media. Last week for 6 days, the show was in the Town of Halfmoon and we had the opportunity to tell hundreds of people about the foundation. It’s not often that I get to meet many of the families, but I was fortunate to meet some on a special night that we dedicated to wearing red in honor of those children fighting and in memory of Nick and those other angels who lost their battle. Each day brought new blessings.

I met Alicia who lost her teen daughter, Brandi, in 2013. She had her other children with her and it was wonderful to be able to hug her and give them a chance to bring some laughter into their lives. I was able to connect Brittney and Kacey who have similar restrictions due to their illnesses. But seeing them lively chatting together while they filled 300 bags (thank you!) was so inspiring. They refuse to let side effects run their lives. They see the magic in the moment, even though some moments are so bright.

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Little Abby and Bella both gave me heartwarming hugs, as well as all the families who came. Those connections are a lifeline when the cancer journey gets tough and so inspiring to keep us all going in our mission to fight cancer.

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Connecting is essential to battling any disease and getting through it whole. Maybe not the same as you were when you started, but whole in spirit and heart. Yes, we are never the same, but when we come together as a cancer community, we know we can get through anything and come out stronger, truer to what matters, and loved.

Thank you to the Gillette Family, the Loiselle’s who made this connection for us, Kevin Tollisen, Halfmoon Town Supervisor, all the volunteers who helped throughout the event, and the community for coming together to laugh, heal, and spread hope. In addition to all the gathering together and having fun, The Gillette Family donated $10,000 to Nick’s Fight! Our appreciation is endless!

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