We are There for You

card
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.

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 ❤️

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.

justin
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.

justin2

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.

Letter to Nick

Hey Nick,
Last night was our foundation’s 4th Annual gathering to celebrate 2012.  The whole night really exemplified what your friends, Stephen, and his friends have accomplished. If I could change our lives, I would have you with our family, hanging with your friends, going to your senior prom, and graduating from high school.  Today is Tyler’s 18th birthday and I know the two of you would have been celebrating together. Happy Birthday Tyler. We love you!

Nick (11) and Tyler (12) at our annual July 4th celebration. 
Nick with Tyler at his 13th birthday party.

But as I try to live my life without you physically here, I can’t help but be proud of the legacy you have built.  Yes, we started the foundation in your name, volunteers work tirelessly to raise money to help families in need and come to a meeting on a beautiful evening, but it’s the essence of your spirit that makes the foundation so energetic, compassionate and strong.  The friendships you forged solidified the dedication your friends feel toward this cause. Their enthusiasm attracts other teens who may or may not have been affected by cancer but want to make a difference.  This adds longevity to our mission. Anyone involved in this fight can’t help but want to be a part of it.  There isn’t a stronger emotional connection.

One of your friends, PK Gerstenberger, was honored as Teen Volunteer of the Year for all his hard work with Nick’s Round Table.  I know losing you affected him terribly, but I’m so proud of how he has taken a hard loss and changed it to a wonderful mission.

Nick and PK at their 7th grade chorus concert.

Last night over 70 guests met 3-year-old Parker Ragone who was diagnosed with Leukemia at age 2.  His brilliant eyes and bright smile melted their hearts.  He is your warrior this year–leading the way to let others know his story. His journey will positively affect other children fighting cancer.  My wish is that you will look over Parker, keep him healthy, and we will keep helping children fight cancer in your name.

Parker Ragone–Nick’s Warrior for the 2013 Nick’s Run to be Healed 5K

Always in my heart,
Mom

A Parent’s Love Knows no Limits

Nick with me when he was 11 years old.  Stephen was the photographer and kept cutting off our heads! Glad he got this one.

On the one year anniversary of Travyon Martin’s death, I watched his parents talk about missing their child and their continuous fight for justice.  His mother, Sybrina Fulton explained that she had one child in Heaven and one on earth and she is trying to do the best for both of them. 

It doesn’t matter how your child dies or how old they are when they die, it’s a loss that you can never get over.  Losing a child isn’t something to get over like a cold, it’s learning how to live with your child in a different way.  Like Sybrina, I have said that I have an earth son and a spirit son and I make sure I spend time with both of them. 

I enjoy watching the funny videos that Stephen wants me to watch or listen to the latest song he has downloaded on Itunes.  My husband and I travel extensively with him for the soccer team he plays on.  We talk about Nick and I show Stephen photos that I have of them growing up.  That time with him is precious and I’m blessed to have him in my life.



My husband and I enjoy watching Stephen play at soccer tournaments.

Since I don’t have Nick in the ‘physical’ sense, it’s obviously harder to know that I’m connecting with him.  The best way I do this is by writing to him.  I mainly write about our family, especially his little brother and I ask Nick to keep a special eye out for Stephen.  Nick often comes to me in my dreams and he sends messages for me or for his close friends and family.  Even his close friends have dreamt of him and I know that helps to ease the sadness of missing him.  I keep ‘open’ to signs that Nick may send letting me know that he is all right or close by. Having that faith that he is connected to me helps on the days when the grief storms flood my world.

As Trayvon’s parents fight to find justice for their son’s death by changing laws on gun control and self-defense, Luke and I continue to help other children battle cancer or live a fulfilling life while they are in treatment.  Nothing can change the world quicker than a parent who has lost a child and the love parents have for their children is the most powerful motivator.  But even if we give our hearts toward the cause that took our children, sometimes justice or healing doesn’t come quick enough and that can tear you apart. But we continue because a parent’s love knows no limits or boundaries.

My wish for Sybrina Fulton and Tracey Martin and every other parent who has lost a child is that you find a way to continue that relationship with your spirit child, enjoy the blessing of the children you may have with you still on earth, and know that even the smallest action on your part is making another child’s life better.  May this give you a sense of peace when change is slow and your heart is extra heavy.

Teens Helping Teens Fight Cancer

Friday, June 8 was the Relay for Life at the Shenendehowa High School’s Track field.  Nick’s Round Table, a teen advisory group, was in charge of the Fight Back segment of the evening at 11:15pm.  25 teens were lined up the steps of the bleachers and one by one they held up a photo of a sibling, a friend, or a classmate who either lost their battle with cancer or was still fighting. The crowd was silent and attentive.

They spoke about what Nick’s Round Table does:
Awareness: Raises awareness about pediatric cancer.
Dignity: Members treat each other and kids with cancer with honor and respect.
Hope: They provide hope through comfort bags, birthday packs and cards to help kids feel special.
Healing: Promote healing by raising money to support families, update DVD’s and videogames to make their hospital stays more comfortable.

They explained what others can do to help someone with cancer:
Courage: Hold their hands, go to appointments with them, share your strength to help them get through each day.
Laughter: The best medicine. It’s a great distraction during treatment.
Respect: Treat kids with cancer like human beings.  Have patience when they are having a hard time.
Strong: Be encouraging, optimistic. Don’t lose it in front of them, but it’s OK to cry.
Friend: Be a friend. Keep in touch. Listen. Be in the present moment when you are with them. Text. Watch a movie. Play a game. Be supportive.

Members of Nick’s Round Table–The Fighting Dragons Team!

Teens ranging from 6th-12th grade came up with these ideas.  They empower other teens to fight against cancer, inspire adults to reach out and make a difference. They ease their own grief by giving to others. 

Teens Helping Teens Fight Cancer.  I am so proud of them and am confident that some day these teens will grow into compassionate adults who will conquer cancer once and for all.