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.

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.

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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.

 

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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.

Family Connections Program

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It takes amazing doctors and medicine to physically heal a child with cancer. It also takes social workers, child life specialists, music therapists, art therapists, therapy dogs, and other forms of therapy to emotionally heal a child and their family from cancer. This isn’t a quick fix. During treatment, many programs are available when a child is inpatient or in the clinic. Nick’s Fight to be Healed Foundation, along with many other practitioners and fabulous foundations, provide distractions and stress-relieving programs. These are just as important to help a child, their siblings, and family live a fulfilling life after treatment.

This idea of connecting our families outside of the clinic and hospital has long been a wish for our foundation. With the guidance of Courtney Hill, Licensed Clinical Social Worker and OSW-C (Oncology Social Work Certified), this is now happening.

On Wednesday, March 7, the pilot Family Connections program will begin. Its purpose is to bring families affected by cancer, no matter where you are in your journey, together to build community, share thoughts, feelings, ideas, and connections.

Karen Patchell, board member of Nick’s Fight to be Healed Foundation, is a Baptiste-inspired Registered Yoga Teacher for children and adults. She began the Flow to be Healed program at the clinic in February 2017. Fun games and simple poses empower a child to develop tools that help them move and use breath and focus to take their mind off any distractions or discomfort. Yoga improves their self-confidence and heals mind, body, and spirit. Children and siblings will have their own separate yoga activity and then parents, caregivers, and older teens will have the opportunity to stretch, flow, and decompress. Remember to wear comfortable clothing! That’s all you need.

Janine Cammarata is co-founder and president of Nick’s Fight to be Healed Foundation. She started the foundation in memory of her son, Nick, who passed away on October 26, 2008. Janine is a published author and teaches journaling for healing and self-awareness through her Write to be Healed program. Journaling encompasses so many different art forms and topics from daily events, junk journaling, goal setting, tracking, and buckets lists. But it can also be transformative, life changing, as well as healing.

This program is open to everyone in your family. We hope you can take advantage of it. The next one is scheduled for April 4. Below are some FAQs you might have. Please let Courtney know if you can come, so we can have enough supplies for everyone.

It takes more than medicine to heal and together we are stronger.

group FAQ

The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

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Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

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Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.

We are There for You

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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.

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.

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.

Luke’s Legacy

Everyone has a legacy. As parents we hope our legacy will live through our children.  But as a parent who has lost a child, I have learned that our children create their own legacies and have their own paths.

luke romano nick warrior

Luke Romano’s Legacy lives on, because of the clear vision he had on how he wanted to live his life and how he wanted to be remembered. I am always in awe when our kids with cancer see beyond their illnesses, their fears, their deaths. Luke impressed me with not only his maturity, but his foresight to ask that our families join forces in order to help other kids more effectively as they go through their cancer journey.

Not many adults would look beyond the ego and see the greater good. Luke did and his legacy continues with providing amazing pillows to teens in the comfort bags. The Family Hope Bags are given to newly diagnosed patients so that their parents can focus on their diagnosis and not where their next meal is coming from when their children are suddenly inpatient at the hospital. His legacy continues by providing scholarships to kids to make the world a better place and raise awareness and increase empathy for teens and young adults about the emotional and physical effects of cancer.

I remember Luke today not because this is the day he passed away. I remember Luke today, because he reminds me of all the work that still has to be done. He gives me the strength to keep going, because he would have done the same. His legacy inspires us to never give up and provide support so that kids with cancer can live fulfilling lives the way they want to. So that they can grow their own legacy.

Thinking of you today, Lucas and hoping you and Nick are proud of what we have done in your memories. You continue to guide us.

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 ❤️

Flow to be Healed Yoga Program

Announcing Nick’s Fight to be Healed Foundation’s new Flow to be Healed Yoga program at The Bernard & Millie Duker’s Children’s Hospital in The Melodies Center!

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One of our biggest missions is how to reduce stress for the entire family when a child is diagnosed with cancer. We have focused on helping with financial needs and emergency items for initial diagnosis, and anything that will distract, comfort, and keep a child connected to those they love. It’s healing, effective, amazing work.

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Karen Patchell, creator of Flow to be Healed yoga program at The Melodies Center doing a pose with Bella Caruso, while she is receiving chemotherapy.

But when you can teach a child that everything they need to fight stress, fear, pain, and frustration is within, then you empower them to be the captain of their own vessel. They have an internal tool that they can literally use anywhere! Bella loves the games and the stretching. She even showed her mom some of the poses when she got home!

Karen has been a part of Nick’s Fight to be Healed Foundation since its inception. A second mom to Nick and Stephen, she has dedicated much of her life to helping kids with cancer. When Karen decided to become a Registered Yoga Teacher (RYT) for children, she found her calling. She slowly brought yoga into The Melodies Center with fun games like blowing up a balloon to teach about breath or sharing books on yoga that featured different animals and how they represent yoga poses.

This was positively received by the staff at the clinic, and the program began on Friday February 17, 2017.

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Not only is the dragon on the mat a symbol of our foundation, but it is a focus point. Focusing on an object or stationary point is calming, because it stills the body and brain and helps maintain balance in standing poses. It also allows the children to move their bodies in a safe way instead of looking around at distractions.

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Karen standing in tree pose with Amelia and Bella.

Amelia pictured in purple was one of Karen’s first students and was thrilled to be there for the first gathering. Her mom says, “She LOVED it and I think it is great….it’s something relaxing for the kids to do but fun as well.”

Not only is yoga fun, but it helps the children deal with the uncertainty and pain that can come with cancer treatment. Karen teaches a type of breathing called Lion’s Breath where you inhale, then open your mouth, stick out your tongue, and breathe out with a roar. Concentrating on breath, takes their mind off of the anxiety or discomfort of getting their port accessed, for example. The action gives them control in a situation where they don’t have much at all.

Rob Saba, Director of Development, Grateful Patients and Families at Albany Medical Center, happened to be giving a tour when he came upon the yogis practicing. Rob shared how this program provides not only much needed distraction, but socialization and interaction, which helps heal.

 

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Anyone can do yoga. Even a child connected to an IV pole.

A child’s cancer journey can last up to three years and sometimes longer. Angie Silipigno, Child Life Specialist, at The Melodies Center is excited about this program because they are always looking for new and innovative ways for children to improve their experience. Nick’s Fight to be Healed Foundation has always recognized that it takes more than medicine to heal a child.

Angie writes, “As I observed the first session of Flow in clinic last week, I saw wonderful things happening . . . Two young girls socializing with one another, engaging in physical activity despite the presence of tubing and IV poles, the passing of time in a positive way, exploration of their bodies, and above all, lots of laughter.  One of the best parts of this program is that it can be used with any age patient, as well as parents and other caregivers . . . At a time when a patient may be feeling self-conscious about their bodies or their physical abilities, this can be utilized to help them become more aware of their body using breathing, relaxation and stretching to establish an improved level of comfort and empowerment . . . Karen has a warm and welcoming presence. She has such a natural ability to assess a patient’s comfort level within a brief moment and meet them right where they are.”

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That’s the healing power of yoga. Accepting where you are at the present moment and making the most of it. Despite the fact that these children are battling cancer, they can heal through connections, yoga poses, and laughter.

 

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.

 

Hope in a Bag

In 2010 when I started interviewing families to write my book, What Makes Them Amazing: Inspiring Stories of Young Adults Fighting Cancer, I didn’t know that it would also initiate positive and comforting services for our families at The Melodies Center.

I still remember interviewing Nick Bowen and his mom, Carol. At age 11, Nick was rushed to the hospital after he passed out in the tub. He was diagnosed with a brain tumor and stayed in the hospital for weeks. Carol said, “All I brought with me was my pocketbook and my Bible.”

We don’t plan to be told that our child has cancer and not be able to go home. That was how the Nick’s Fight to be Healed Family Hope Bags developed. We thought, What would a family need for an emergency overnight stay at the hospital? Ideas for what this bag would contain came from an amazing warrior, Luke Romano. Luke dealt with cancer for seven years, so was an expert on preparing for hospital stays and what a family needs. Usually one parent has to stay with their child, so the Family Hope Bags are geared to support both. The “Red Bag” is delivered by the child life specialist or social worker when a child is diagnosed and inpatient.

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There are essentials like shampoo, conditioner, body wash, lotion, hand sanitizer, hair brushes, toothbrushes, toothpaste, deodorant, hair ties, laundry detergent, and chapstick.

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Being in a hospital and facing cancer is devastating, so we focus on making others comfortable. Having cozy socks, eye pads to block out the light, headphones to listen to music, a journal to write your thoughts and keep track of doctor notes are all included.

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Hope and the connection is brought about by including a letter from a local family who has gone through what this family is now going through. We know how scared our families are and to have hope given by someone who have been there is priceless. This year we also had kids from Niskayuna Elementary School writes cards of comfort that are placed in every bag. They are thoughtful and compassionate notes.

Family Hope Bags are our most time consuming project, but it is also the most worthwhile. Besides the wonderful staff at The Melodies Center, these bags are the first line of comfort to get a family emotionally, financially, and physically through cancer treatment.

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Everyone calls them the “Red Bag.” Surrounding this black front with white logos is a red duffle bag that families can carry back and forth to the hospital. Our wonderful sponsors donate gift cards to Starbucks, Dunkin Donuts, the cafe at the hospital, Panera, and the Recovery Sports Grill provides gift certificates to their restaurant. We couldn’t do this without them.

Annually, the Southern Saratoga YMCA has a drive to collect essential items and it makes a huge difference.

In addition to these initial gift cards, Nick’s Fight to be Healed provides gift cards each month for ongoing treatment that Angie, the clinic child life specialist, and Courtney, the social worker, hands out to families. Reducing stress is key to healing.

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Emily Hayes, President of Nick’s Round Table, packs bags with all the supplies donated by our local sponsors, Nick’s Fight to be Healed, and Luke’s Legacy.
It takes hours of shopping, separating, copying, folding and packing these bags before they can be brought down to Albany Med. Between 70-90 bags are given to families each year.  That means up to 90 children are newly diagnosed with cancer each year just in our area. We have a lot of work to support our families and we do the best we can.

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Amanda Hayes, Technology Chair for Nick’s Round Table, is at the other end of the assembly line.
Teens from Nick’s Round Table, along with their amazing leader, Annette Romano, shop and pack all these bags. It’s a daunting task, but they do it with joy on their faces, because they know how much these bags mean to families.

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Dylan Nezaj, Vice-President of Nick’s Round Table, lends a much needed hand in organizing the Family Hope Bags.
It takes more than medicine to heal a child. It takes love, in-hospital services, comfort, and hope. Nick’s Fight to be Healed Foundation does this and needs your help to continue.

If you would like to donate gift cards from Target or Walmart to purchase supplies for these bags or gift cards in $25 increments to Starbucks, Dunkin Donuts, Panera, or CVS, please mail them to:

NFTBHF, Family Hope Bag Program, PO Box 217, Rexford, NY 12148

If your company would like to sponsor this program, please contact Annette Romano at aromano12@nycap.rr.com

Thank you to our volunteers, our sponsors, and everyone who helps us in our mission.