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.

Annual Donation to The Melodies Center

boardwithangiedr.lucas
Nick’s Fight Board L-R: Liz Carr, George Sisco, Colleen Williams-Wright, Dr. Lucas (Director of Pediatric Oncology), Angie Silipigno (Child Life Specialist, Melodies Center), Janine & Lucas Cammarata, Jonathan Isaksen, Annette Romano. Not in photo: Karen & Mark Patchell, Ann Frantti, Angela Chieco & Susan Sukols

A heart full of love and time spent helping others is a good day. When we come together to share the fruit of our board and community’s hard work that is a fantastic day.

On Thursday, December 14, Nick’s Fight to be Healed Foundation donated $25,000 to the Child Life Specialist position at The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Medical Center. In addition, we donated $15,000 toward technology needs in the new teen technology room that is currently being built in the pediatric oncology clinic.

lucasangieandjanine
Lucas Cammarata, Angie Silipigno (Child Life Specialist), & Janine Cammarata

Lucas and I, as well as Annette, have seen first-hand how important and vital the child life specialist is to the children and teens being treated for cancer. They balance the medical and emotional needs of each patient. Angie is the only child life specialist in the clinic. There are more on the in-patient floor, but Angie meets every single patient as they are diagnosed. That’s 90 new patients a year, but includes all the patients who come for treatment from the previous years and check-ups from the years before that! Approximately 900 children, teens, and young adults are seen at The Melodies Center each year! Angie treats every single one of them as if they were her own. She feels their pain, revels in their successes, and holds them all in her heart. She is a major reason why we work hard all year to raise money.

Nick’s Round Table has raised money for the Teen Tech Room, and it is another huge need that we can’t wait to have filled. Teens and young adults with cancer are often in a transitional part of their life. Some are going through puberty, some are starting college, some are starting careers or life with a partner/spouse, but suddenly they are thrust into a world where they aren’t sure where they fit in. A teen/young adult’s life has not only been disrupted, but displaced.

nicksroundtableangierob
Nick’s Round Table L-R: Becca Abel, Angie Silipigno (Child Life Specialist), Katie Kelly, Sarah Olsen, Brittney Decker, Grace & Claire Isaksen, Rob Saba (Dir. of Development, Grateful Patients and Families at AMC)

Having this teen/young adult haven will give this specific age group a space to decompress and connect to their life outside of cancer. It can be a space where they can bond with others in their situation and hopefully feel the support we have for them and every other child diagnosed.

It was a busy year for us with families in need. Over $25,000 granted in financial assistance, $2,400 in gift cards for patients and families, $9,000 for Family Hope Bags, $2,000 in Nick’s Comfort Bags. This doesn’t include holiday support, magazines, DVDs, video games, arts & crafts, and anything else that comes to our attention. The time and effort that our board and volunteers put into making this all come together cannot even be counted. Board member Karen Patchell visits the clinic once and sometimes twice a week with Chloe our therapy dog and also to do yoga. The children absolutely love her!

ameliaandbellatree
Amelia & Bella love yoga!

I couldn’t be prouder and more thankful for everyone who makes up our foundation. It’s important to sit back and absorb our accomplishments this year and since the beginning. Nick Cammarata and Luke Romano are surely proud of all we have done in their names.

lukeandnick

Thank you to everyone, and we look forward to continuing our mission in 2018.

Community

IMG_0038

It starts with devastating news and your world shrinks in on itself as you realize that nothing will ever be the same. Your perspective shifts and what use to bother you is no longer relevant. You cherish those precious moments with your children, your spouse or partner, family, and friends, because they may never happen again.

Then you are joined together with the staff at The Melodies Center and your world gets a tad bit bigger and you are held tighter by a larger circle. Then those who have walked in your shoes reach out and take your hand, and you finally appreciate the unbelievable community that has taken you in and feels the same fear, pain, worry, and heartbreak with you.

IMG_0198adj

This community also cheers you on when the news is promising. They are your biggest fans, your strength, your rock, your cheerleaders.

IMG_4595nospot

And no matter what they have going on, when you need them, they are there for you 100%, no questions asked. They hold you up. They are your foundation. They come from all walks of life, because cancer doesn’t care how rich, poor, tall, short, successful, shy, or healthy you are.

But we care and that is what makes all the difference. There are volunteers who have put aside their own problems, sadness, losses, and hurts to help raise others who are at their breaking point. This is community. This is what keeps me going. I am thankful for everyone who helps with our fundraisers and especially this run.

Register now for our 8th annual Nick’s Run to be Healed 5K. Tomorrow is the deadline to get the dri-fit shirt. For sure that is incentive.

But really what matters is that we all will come together as a community and be there for one another. That is what we do for no other reason than because we care and September is our month to raise awareness.

www.fighttobehealed.org

Nick Cammarata–The Catalyst

NickCammarata

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.