September-Childhood Cancer Awareness Month

family photo 2008

This is the last family photo we have of us together. It was Labor Day weekend 2008, and our family convened to share the love and laughter that has always carried us through hard times.

Nick had developed an infection, had appendicitis, and spent most of September in the hospital. It’s like a time warp. The world continued around us, people came and went, but we were stuck in this cocoon of uncertainty. I had always assumed Nick would survive, but with the heavy doses of methotrexate he had received, the infection became life threatening.

As a parent of a child with any life threatening illness, it’s very difficult to make the right decision. We were exhausted, scared, and not familiar with this disease. We had multiple doctors giving their suggestions and sometimes it was like throwing a dart. Nick continued to decline, but we still rallied surrounded by hope and the need to believe that he would be alright.

September is Childhood Cancer Awareness month. It’s one of my lowest months of the year, because my heart remembers how much Nick suffered. I didn’t journal much in that month and really I don’t want to remember the details.

It is 10 years since Nick battled cancer. Time doesn’t heal, and it doesn’t make it acceptable that I lost my oldest son. It doesn’t mean I’m over it or that I’m always OK.

10 years later, I’m living with Nick’s loss beside me. Sometimes the grief is a burden I have to carry, and it weighs heavily on me. Other times I can stand tall and walk alongside it and hold others up.

I share this because I want those who have lost their child to know that I am here with them. I will walk alongside them, so they know that some day they will be able to walk alongside their grief. Grief is chronic. It flairs up, it eases off, and then ruptures into painful boils, scabs over, and starts again.

I may never be whole, but I can live a fulfilling life. You might not believe it right now and that’s OK. I’ll be with you through this journey no matter what point you are at.

Taking action, raising awareness, demanding better treatments for our children battling cancer is the path of those who are on this journey with me. September is Childhood Cancer Awareness Month, but every day too many children are diagnosed.

Shen Goes Gold

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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.

 

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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.

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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.

Self-Care

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The countdown for Nick’s Run is 7 days. It’s been a whirlwind of finalizing all the details and promoting the event to make it the biggest one yet. Part of the promoting is being on the radio and TV. I had the pleasure to talk with Marc Kaplan with Siena’s station 88.3.

One of Marc’s questions was what advice would I give to anyone whose child is battling cancer. What advice for the parents? My biggest advice, which is also the hardest to act on is self-care.

For the four months that Nick had cancer, we were in the hospital a lot, and I usually stayed with him. Stephen was only 10 and wanted his dad. I didn’t exercise, I barely left his room, and my diet was terrible. I remember wishing that someone would come and pluck my eyebrows. I was afraid that if I wasn’t there something would happen to Nick. A couple times Luke stayed, and it was wonderful to spend time with Stephen, but I often felt that my heart was split.

Imagine doing this for years. Any parent would do the same and eventually it takes a toll on our bodies, mind, and spirit. It also affects our ability to make decisions. I think I was on autopilot, and taking a break even to sit in silence or do the yoga practice that I do now would have benefitted all of us.

So during this month of Childhood Cancer awareness, we know that taking care of your sick child is the priority. But remember to take moments for yourself to read a book, write in a journal, take a walk, do yoga, exercise, and eat well. Do what nourishes you and gives you moments of peace. It will make a difference in the long run.

What are other suggestions for self-care?

Muscle Memory

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.

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Our family September 2008.

Chased Away Leukemia

 

 

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Janine and Chase at the Ride to be Healed Motorcycle Fundraiser

If ever someone would be called a miracle baby, Chase would be it. Today is Chase’s 6th birthday! Happy Birthday, Chase! But he had been fighting cancer since he was 1. For his whole life, cancer is what Chase has known. He has been on the brink of losing his battle to moments of reprieve, only to be thrown back head first into the foray.

That type of rollercoaster ride would throw any family into overdrive and drop them into exhaustion. It takes a team to make the right decisions on treatment, takes faith to hope you made the right decision, and takes a community to hold you up when those decisions don’t go as planned.

The hardest part of being a parent with a child fighting cancer is the second guessing. Decision-making plays with your mind as does the exhaustion from sleeping in the hospital with your child or having to still work when you are worried out of your mind. It doesn’t matter if it’s the child’s other parent there. As a mom, I needed to be with Nick to make sure that nothing went wrong.

But despite our best efforts, things can go wrong. Chase had so many side effects from his transplant, and chemo. This poor child suffered without really knowing why he was suffering. It was what he thought life was like. That is the horrible part of cancer. These medicines that should help tend to hurt more than the cancer.

Through the power of faith, family, commitment, determination, and community, Chase pulled through. Now he is a little boy who fights with his sister, knows how to smile to get an extra treat, and enjoys running around. So many people and foundations helped his family get through, but his family was the backbone.

Chase, I hope you enjoy your birthday and have an extra piece of cake for me–tell your mom I said so! Love you and your family!

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Peyton, one of Chase’s siblings he gets to harass! I see those bunny ears!

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.

Building a Compassionate Generation

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Brandon & Paige Farinaccio

Last night Luke and I attended the wedding of one of the young ladies who grew up with Nick and Stephen. Paige was a few years older, but her younger brother, Jason, went to preschool with Nick, and they all practiced karate together.

Paige is the first of our kids to get married. It’s weird seeing the young adults beginning their adult lives, and there were a few times last night when despite all the happiness, I thought of Nick and all he was missing.

Stephen couldn’t go, but at least it was because he was at school. He was doing something productive. I miss my boys in different ways.

Instead of giving favors, Paige and Brandon wanted to make a donation to Nick’s Fight to be Healed in memory of Nick. Leave it to this amazing couple to think of my boy. We were honored and touched.

It was extra special, since their gesture started on the first day of ┬áSeptember being Childhood Cancer Awareness month. As we remember our children who are no longer with us and continually fight alongside the braves ones battling, it’s important to acknowledge this generation of compassionate philanthropists, who take any opportunity to make a difference.

Paige and Brandon are just beginning their lives together. Yet they took the time to embrace what was a devastating part of all our lives, and they infused it with love and hope. They and all the young adults who celebrated with them are our future. They are the ones who will continue to give back. We set the example, but they took action.

Nick would have been dancing up a storm at the wedding last night with Stephen right there with him. Cancer took that away from us and that is why we all have to take action.

Paige and Brandon, we wish you love, happiness, and good health for you both and your children to come. May you continue to make the world a better place and thank you for thinking of others when it was your special night.

Nick Cammarata–The Catalyst

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My oldest son, Nick, was born after two years of trying to get pregnant and 12 hours of back-breaking natural labor on October 7, 1995. From the moment Nick was born, he was enthusiastic, warm, happy, and had a light that burned so brightly in him. His sense of humor was over the top and he was very outgoing.

Nick started swimming competitively at age 9. In January of 2008, I noticed his fatigue, but pushed it off. In June 2008, he struggled with ear infections, which wasn’t anything new, but this time a rash occurred from antibiotics or so we thought. On July 4, 2008, my healthy, exuberant son was diagnosed with T-cell Acute Lymphoblastic Leukemia. He didn’t go into remission after the first month, which started a path of the toughest chemo that ruined his body inside and out. He struggled with allergic reactions, infections, fatigue, vomiting, had to have his appendix removed and part of his colon. Everything that could have gone wrong did.

He spent most of September in the hospital in pain and all I could do was hold my baby and try to ease his pain. He turned 13 on October 7, 2008, he went into remission on October 18 and planned to get a bone marrow transplant. My birthday was on October 19, his little brother Stephen turned 11 on October 21. On October 26, 2008, Nick passed away suddenly from a spontaneous brain hemorrhage from the chemotherapy. October is a tough month for our family.

My heart cracks a bit more at this time every year. I try not to relive what my son went through, but it’s hard. Instead I think about all that Nick has done. By taking the path that he did whether or not he or his soul chose it, veered us toward a much different path than we had thought when we first had children. You don’t think you will be burying one. If Nick never had cancer, we would not have started Nick’s Fight to be Healed. Our services may not have occurred. It amazes me what Nick’s life and passing has brought to this world.

It’s a hard path. It’s sad, heartbreaking and relentless. But just when I think I’m done, that I can’t go through another day, Nick shows me someone who needs my help; he sends a light to ease my darkness. These contrasts of good and bad, dark and light, life and death. This is what living is all about. And every day he and all the other children who battle prove to me that no matter how full of despair I feel, there is always hope.

Read these stories that will be shared every day during Childhood Cancer Awareness Month. Think of our children fighting for their lives and act. Whether it’s liking or sharing a photo or post, pasting our logo that raises awareness onto your social media, sending a note or care package to a child with cancer, making a donation at http://www.fighttobehealed.org or volunteering. Do something every day in September, because each time you do, you are the one spreading hope.