Courage

courage

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.

Expanding your Heart

This past weekend was the 4th annual Purple Tie Affair benefiting Nick’s Fight to be Healed Foundation and The Leukemia & Lymphoma Society through Team in Training program. It’s always a night of celebration, good food, and dancing, but at this event many hearts were bursting.

In the beginning of the evening, we held a special cocktail hour that gave those affected by cancer a chance to share their story. I spoke about our foundation and welcomed everyone to enjoyed themselves, but asked that tomorrow everyone think about what they could do to help a child beat cancer. We all have a special light or passion within ourselves that we can use to make the world a better place and to make a difference for someone battling cancer.

Purple Tie committee and Anthony Yevoli LLS Boy of the Year making a fantastic speech.

Nick had a huge heart. He was such a love bug, compassionate, and enthusiastic. He had a zest for life that was infectious. When I lost Nick instead of sealing off my heart to life, I opened it and reached out to help others with the assistance of my friends and family. I can’t change what happened to my son and losing him will always leave a gap in my life. But by opening my heart and taking on this mission to help children with cancer, Nick has brought more love into my life. He has guided me to children and young adults to make my heart soar with their bravery, determination and simple love of life.

Some of the amazing volunteers and board members of Nick’s Fight!

Today I went to visit my friend, Justin, who has been in the hospital for a bit of time with complications from his treatments. Justin is the ultimate warrior. He has had a rough road, but he remains brave and true to his desire to be healed. Justin was a bit low when I arrived. He looked tired and was curled up in his bed.

I sat and we began to talk about all the fantabulous Marvel comic movies that have been made throughout the years and how they all thread together. Justin knew the characters, the connections, and what movies were being made and were coming out this year. As he spoke, his eyes lit with enthusiasm and true interest. Then our conversation continued onto Greek, Roman, Norse, Egyptian, and Irish mythology. Justin is a powerhouse of knowledge and as anyone knows I love Marvel comics and mythology. When we talked about the Renaissance, I knew we shared something special. By the time I had to leave, Justin was sitting up in bed drinking a coffee coolatta!

I wish that Justin had never gotten cancer. The same way I feel about Nick and every child who has been diagnosed. But if I would have sealed myself off from this world, never to be around children and young adults who are battling, I would have never met Justin. So much of what Justin loves is what Nick loved, and he made me so happy to sit there and talk about what we are both passionate about. Spending time with Justin today made my heart explode with joy!

I hope our visit helped him too. It’s hard being in the hospital every single day when you only want to be at home and with your friends. Justin is a true knight that King Arthur would surely have had at his round table, and when he is better, I hope that he will join Nick’s Round Table.

Thank you, Justin for chilling with me today! Feel better!