Creating a Ripple Effect

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Abby and Matt, celebrating life!

As we raise awareness this month about childhood cancer, we show the harsh side of it; the devastation, the heartache and pain that our children go through. The posts about childhood cancer facts are very much appreciated, because facts don’t lie. When we are faced with the truth, we can no longer sit back and be complacent.

There are many ways to create change and face a cancer diagnosis. Abby Sayles and her family have shown us a positive and powerful way to battle cancer that is not only effective (Abby is about a year cancer free), but also has caused a ripple effect across the cancer community.

I first met Abby and her family after she married her nurse, Matt Hickling, in a touching ceremony at The Melodies Center. Just this act alone started by the tremendous support Matt showed Abby, raised awareness around the world about what a child with cancer goes through.

Dance to be Healed began to celebrate that support and is now an annual event where children and their families get dressed up, dance, and take time off from their treatment and worries.

For a few years, Abby has walked in our July 4th parade and jumps right into the activity of handing out candy and bags. She truly teaches us that Nothing is Impossible. She is living proof of that.

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Abby always raises awareness in style.

If that wasn’t enough of a ripple effect, Abby and her family started a lemonade stand where she raises money for The Melodies Center and this year for Nick’s Fight to be Healed. Giving back builds community and provides strength to the families who open their hearts to the support.

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Abby, 100% healed and still giving back!

Community makes a huge difference in healing. I truly believe that Abby’s positive attitude helped her to heal. She learned this from her parents and the amazing staff at the clinic.

Now that Abby is done with treatment, she stays connected to her cancer family, because connection continues that ripple effect. The more people understand what a child goes through, the more they will help. When someone who never knew about childhood cancer sees what Abby and other kids have done, then they move forward to create change. Before we know it that ripple turns into a wave of action.

How will you create a ripple effect? What will you do today to help a child with cancer? Doesn’t have to be huge. One stone can cause a ripple.

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  September 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.

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.

Kharismatic Kendra

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Kendra jumped into fighting for her health just like everything else she does–full force. I remember meeting the entire Sisco family at Mocha Lisa’s when they contacted me about Kendra having her 16th birthday party and wanting to make it into a fundraiser for the foundation and The Melodies Center. Her parents, George and Sue, and her big sister, Kailyn, all were there. I could tell immediately that they had a strong family unit.

Kendra had a huge bash and it was the beginning of her philanthropic lifestyle. I believe she has learned it from her parents as they are both very giving and have that ‘get it done’ attitude. Kendra then became part of Nick’s Round Table, which had a huge part in helping her connect and educate students at Shenendehowa High School about teens with cancer. Our perceptions of what kids with cancer should look or act like is very varied. Kendra showed that bald or hurting, she could still be involved, even after missing so much school.

Kendra was co-vice-president of the round table and was Leukemia & Lymphoma’s Girl of the Year in addition to other events she was involved in. Everyone deals with their cancer diagnosis however they see fit and what feels right for them. Even now that Kendra is locally attending college, she recently came to Nick’s Run to be Healed with her family in full force and a powerful team of supporters for Kendra’s Kure. Her cancer journey has led her on a gratifying path.

Kendra’s parents have shown how important it is to make sure your child knows that they are not alone. There are many loving and caring people willing to help, share and advise.

George and Sue express that, “Knowing that there are cures for many of the illnesses and that there are still good people in the world get us through. The people we have met including nurses and specialists will be friends forever. Also giving back to others and seeing it make a difference is empowering.”

We are thankful for Kendra’s health and to have her family’s support!

 

Sammie on Surviving Cancer

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I first met Sammie three weeks after I lost Nick. We had planned a fundraiser with the Mayo, Romano, and Sagnelli families at the 99 Restaurant. Nick was excited to get involved and give back. Then he suddenly passed. I was numb and in pain. When I walked through the door, I saw this darling little girl with tight brown curls circling her round face. She had happy eyes, and we connected from that day forward.

I have been through a lot with Sammie and have seen her ups and downs. My husband and I just brought Stephen back to college yesterday, and I have to admit, I was very sad and need a day or two to get myself back together. Plus, I think of Nick and the fact that he will never go to college.

So I wanted to focus on a survivor who would now be attending college, and I thought of Sammie, in addition to so many others who I will feature soon. Sammie wrote her thoughts about what we need to know about children with cancer and what gives her hope. It was so well-written and honest that I’m including her words.

Janine: What do you want people to know about children battling cancer?

Sammie: I want people to understand that the children who battle cancer, can and (God willing) do survive. I understand we often hear about children passing away and dying from cancer, and I’m hopeful those statistics will change for the better in the future. But we need to change our expectations of what a childhood cancer diagnosis means and stop associating it with death and sickness. We need to change our expectations of what a childhood cancer survivor looks like.

I was a child who survived cancer, became healthy again, returned to sports, began attending school again, whose hair grew back, graduated high school, and now will be attending college. Often friends and teachers are shocked hearing that I am a childhood cancer survivor. I am a very talkative and an extroverted person. When people find out they will make comments like, “I would have never known you are …,” their sentence trails off, but I know what they mean. They are surprised that I’m “normal.” To be fair, no one would know I survived cancer when I was 9 years old. I don’t walk around with an “I had Cancer” t-shirt. I feel like they expect a really introverted, quiet, sort of mysterious person as oppose to a happy and bubbly one. It’s important to understand that every survivor wears their trauma differently.

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Sammie gave back during and after her cancer journey. It heals and helps others fighting the same battle.

I understand my previous illness may be unknown to a stranger or at a first glance. But I am more than my illness. It does not define me. I wish people would really understand that childhood cancer survivors, or even fighters, are so much more than their illness. So much is constantly changing in a child’s life, and cancer is something they will move on from. I wish more people would know that ‘cancer kids’ have the possibility of returning to “normal” life and planning for a future.

Another incredibly important thing I wish people knew about children who survive cancer is that the pain isn’t “less” because it happened to a person when they were younger. It has to be understood that the childhood of a childhood cancer survivor is much different than someone who didn’t have cancer. I’ve discussed this with a therapist and the best way to describe it is comparing it to a tree. Imagine a full grown tree. The tree represents your entire life. The bottom or roots of the tree is where you started growing or your youngest age. As you get older you move up the tree. The earlier trauma happens in a person’s life the more it affects how the tree grows, or how you shape your life and the person you become. Because cancer happens to a person as a child does not mean it changes them “less” than an adult who survives cancer. It actually affects them and who they are as a person more so. And because I get asked this question a lot, yes I do remember my cancer, chemo, and surgeries. I for the most part I remember everything I haven’t already suppressed.

Janine: What give you hope/support to get through each day?

Sammie: At times it can be either really difficult or incredibly easy to find hope to get through the day. There are days I feel empowered and strengthened because I overcame my illness. I feel like I can do or be anything I want. On those days I feel like I am on top of the world, and on other days it feels like the world is on top of me.

I do suffer from PTSD as a result of my cancer. On some days it feels crushing, impossible, and confusing. It is very easy to get stuck on pointless questions of “Why? How? What?” Some days you have no choice but to sit with your thoughts and feel the pain all over again in order to let it go for the moment. Whenever I go for a checkup or a routine scan, anxiety usually accompanies it because I fear my illness returning. If I’m having a bad day I’ll calmly tell myself, “Sammie… You have air in your lungs and your heart is beating.. .You are alive… Cancer may have taken things from you, but you have today… and tomorrow… and the rest of your life….”

Although some days are nasty and feel unbearable, I take comfort in knowing I am incredibly strong. I find hope in the fact that I survived, and my struggles have made me incredibly tough and resilient. I have much more to live for, and I know I am capable of more than I currently believe.

Although my life was completely changed by surviving cancer, I find hope in knowing that everything I’ve been through is all in God’s plan for me. Things were meant to be this way and happen the way they did. I have hope in knowing I can love myself despite the physical and emotional scars cancer gave me. I used my cancer to make myself more passionate, ambitious, and determined in pursuit of my goals.

I guess you could say my biggest hope comes from the fact that I am alive.