Remembering Nick on Independence Day

July 4 is a day to celebrate independence and the freedom our forefathers fought for us to have every day. 10 years ago, it became the day Nick was diagnosed with leukemia.

I believe there is emotional scar tissue with trauma. As July 4 approaches, I feel lethargic, sad, and loaded down with the grief I work to overcome every day. My mind and body know what’s coming. Once July 4 starts, even though I don’t relive all the terrible moments of his cancer journey, part of my mind and body remembers it. The emotions find their way to the surface.

1999 July 4
July 4, 1999

But just as there is emotional scar tissue, there also is emotional endurance that fortifies me with a strong foundation to get back up when the scar tissue limits my ability to live life to my fullest.


Nick t-shirt
July 4, 2008–the day Nick was diagnosed

What gives me this endurance? Surrounding myself with family and friends who lift me up. Those who came the day we heard the news, took care of us when we had to say goodbye, and have supported us over the last 10 years.

They know when I’m faltering, when Stephen needs space, when Luke needs a distraction. I don’t have to say a word, because they know today is a very hard day, but we live it remembering an amazing, enthusiastic, and fun boy who was taken took soon.

Over the years, I have learned what I need to do to break up the scar tissue and provide self-care. Sometimes, I do really well, and I think yes, I can do this. When I think of Nick I smile and reminisce about my two energetic boys who were inseparable.

Other times, I’m flat on the floor, as another friend described it, and I can’t imagine going through the rest of my life without one of my sons to hold, talk to, and share his life experiences with. These are the times when my foundation of family and friends soften my fall and stretch the scar tissue until I can stand again.

I’m in a place today where I am searching for the good. I am grateful for Stephen and so very proud of him. He is doing what he needs to do to live with his loss, and I respect that. My husband is my biggest foundation and knows when he has to catch me. I try to catch him as well. We are continually learning what we each need and give one another the space to grow and grieve.

When I fall and take a hard hit, I give myself permission to reach out. I know I don’t have to be strong all the time. I’m not. I can’t be. Last month was one of those times, and I am grateful for my family and friends for saving me from falling off the cliff.

Losing a child is not an easy journey. Having a child with cancer is not easy either. It’s a road of ups and downs, fears and triumphs. Cancer steals more than our independence.

Today I wish everyone a Happy and healthy 4th of July. For those missing their children, have people to catch you when you fall. We are here for you. For our families currently battling, never give up and keep fighting. For everyone touched by a life-threatening disease, savor every moment and always have hope.

Much love to my boy.  We have lots of Double Bubble to give at the parade. Always in my heart.

We are There for You

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.

Shen Goes Gold

L-R: Ron Agostinoni, Sarah Olsen, Kaitlyn Gilbert, Brittney Decker, Don Flynt, Amanda Hayes, Janine Cammarata

Today many at the Shenendehowa Central High School wore gold for September’s Childhood Cancer Awareness Month. Gold ribbons were handed to hundreds of students and Brittney Decker, president of Nick’s Round Table, spoke about the importance of raising awareness and the purpose of the garden.

Don Flynt, who was the principal at High School East for 20 years retired last year, and I had the pleasure to meet the new principal, Ron Agostinoni. The first thing Mr. A (as the students call him) mentioned to me is that he knew one of the kids whose picture surrounded the garden–Emily. He is good friends with her family and felt an instant connection to our cause.

He then said that he and Mr. Flynt met a couple times over the summer to help with the transition. He figured Mr. Flynt would start with all it took to run a school. However, one of the first topics mentioned was Nick’s Round Table, the importance of the Memorial Garden, and our mission to help kids fight cancer.


Don Flynt honored because of his commitment to his students.

Today, in addition to raising awareness for kids battling cancer, we dedicated a stone labeled with the word ‘commitment’ to Don Flynt. He recognized that in the midst of tragedy, our young adults needed a way to take action. He provided the space, tools, and platform for them to be empowered to help others.

Don Flynt has always shown compassion and integrity, and I believe Mr. A has the same qualities. We look forward to working with him.


For all of our children who are in the midst of their cancer battle, we are right beside you. For those who have beaten this disease, we are ecstatic for you. For our children who have gone before us, we will never forget you and keep fighting in your name.

September is Childhood Cancer awareness month, but every day our kids struggle with this disease. Make a difference today.

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.

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.


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.

Teach Your Children Well

Teach your children well . . . Then let them go.  Perhaps the hardest part of being a parent is realizing that eventually your children will go their own way and follow their own paths, no matter what you desire for them.

We all want our children to be healthy and live long, fulfilling lives.  We want them to be kind, make the world a better place, make good decisions, and be happy.  But what do we do when their lives don’t go the way we had hoped?

2001–Camping in Lake Placid

What if they make a bad decision, marry an abusive spouse, steal, take drugs, get cancer, or die?  Can we control some of these actions? Maybe, maybe not.  Are we responsible for what our children do or how they act?  Are we to blame when our child is diagnosed with cancer?  No and no. The fact that we cannot control our children’s lives can be terrifying.  What can we control?

We can control our own actions and how we react to life, to them.  We can teach our children the values we believe in.  I know Luke and I taught our children to be giving, kind, compassionate, to value family and hard work. I know we taught them well when I saw how dignified Nick was during his cancer journey.  Even when he was in pain, he was kind and compassionate to others. He was a scared 13-year-old boy acting like a brave man.  I’m proud of him, because he chose to act that way.  That’s who he is.

We taught Stephen the same values, and every parent knows that each child can be very unique.  But Stephen continually proves that he is a young man of action who wants to make a difference and change his world.  He is doing this in his own way, and he’s courageous to live without his brother and help other children with cancer.

2002–Cape Cod

Obviously I am not happy about Nick’s path. That dying so young may have been part of his journey, his soul’s lesson, doesn’t help when I miss hugging him, his laughter, or sharing our favorite books. I’m sad every day, then I’m grateful and happy to have Stephen and watch him grow.  This is the life of a parent who has lost a child.  The mix of emotions is often exhausting.  But it’s the same with every parent who may be upset or devastated about the decisions their child has made or didn’t get to make.

Being a parent is an up and down roller coaster, no matter what the circumstances.  Knowing that we have taught them well in preparation for their life journey, hopefully makes it easier to let them go. But not always.

Duct Tape Heals

Bri holding the duct tape wallet Alysia made for her.

I recently visited a special young lady in the hospital.  I met Bri two years ago when she was diagnosed with Acute Lymphoblastic Leukemia (ALL) at age 12.  Unfortunately, this courageous gal has relapsed and must face another cancer battle. I was really sad to hear this, since it is very close to Zach’s relapse, who I recently blogged about.

Bri filled out a Nick’s Comfort Bag survey that the foundation gives to patients ages 10+. Bri is very creative and is interested in duct tape arts and crafts.  It’s a big craze making wallets, bracelets, hair clips, and even dresses!  My niece, Alysia, has been making duct tape wallets for the past year and has become quite good at it.  I asked her if she would like to shop for Bri’s comfort bag and also select different duct tape patterns. She did and also decided to visit Bri in the hospital.

Alysia met Bri and showed her all the different styles and color wallets she has made.  She shared tips on creating them and Bri loved her pink and blue personalized wallet.  This visit had a positive impact on Bri, and meeting a new friend who shares her interests is a great distraction.  I was happy to see her, meet her sisters, and her grandmother.

Plus I think (and hope) going to the hospital was healing for Alysia, after losing her cousin to cancer.  It’s hard going back to a place with painful memories.  But Alysia thought beyond that and keeps Nick’s spirit alive by giving.

Bri, her little sister, and Alysia

Bri,keep fighting cancer and create duct tape magic! Alysia, I’m proud of you for using your gift to help others!

Spending time with someone who is sick or sad can change everyone’s life around.

Duct tape really does hold everything together!