A Force to be Reckoned With

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This past Sunday, an amazing group came together to not only raise money for Nick’s Fight to be Healed Foundation, but also provide a place and a path to healing and breakthroughs. Karen Patchell has spearheaded our Flow to be Healed program at The Melodies Center, and we are working on a program for parents as well.

Two Baptiste teachers, Sheryl and Tanya led and assisted the class speaking of all that is possible no matter where you are in your life. Two other teachers, Jess and Carly were participating, and their presence strengthened me as I dedicated my practice that day to Nick. Others were volunteers who help our children as they battle cancer. While others were on their own cancer journey, but were in a supportive atmosphere where illness was left at the door. Some may have come to do yoga, but left with a new perspective.

We are a force to be reckoned with. It doesn’t matter where you are in your life. Everyone has a journey, a story, a current fight, feelings of sadness, fear, or trauma. This amazing yoga community creates a holding space where you can go and be with whatever feeling is within you that day. You have a place to let it out. Having this force of support gives me strength.

Maybe it’s not yoga for you, but it can be. Maybe it’s the community of parents going through the same situation. A child fighting for her life. You are in the same place because of circumstances, but connected by the force of hope that will always rise in you.

Whether it’s doctors, nurses, child life specialists, social workers, family, friends or volunteers–we are a force that is more powerful than cancer. We are a force that will hold you until you can stand on your own two feet once again. We will hold your place until you return. Nothing is Impossible.

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.

Katie Collins–Teen Volunteer of the Year!

When Katie joined Nick’s Round Table, she was a quiet, observant volunteer. I’m not really sure what caused her to join the group. Maybe it was her brother, John, who had become a member. Katie soon became involved in many events and constantly volunteered for fundraisers, to do arts & crafts with children at the hospital, or to go to events to support other children.
Katie connects with the kids quite naturally. She has become attached to many of them like Parker and Abby who she is holding below at a recent Chipotle fundraiser. She gives freely and the children feel so comfortable with her. Katie has the natural ability to make others feel good.
Katie and Abby. It was love at first hug!
Stephen presenting Katie with her award at our annual gathering.
Katie and Stephen became fast friends and once Stephen realized how shy Katie was, he often put her on the spot to speak about the foundation. As one shy person to another, Stephen knew what it was like to have to speak in front of a crowd and feel hesitant, unsure, and nervous. Both he and I saw the potential in Katie. Stephen always jokes with Katie so that even when she’s worried about speaking he is making her laugh.
Katie would want to know if she had to speak at an event. Stephen even pranked her the day of this gathering saying that he was sick and she would have to speak! A couple years ago, she probably would have stayed home. Now she would figure out what she wanted to say and in her sweet and compassionate way would do a fantastic job.

Katie and her wonderful family!

Katie after shopping for Nick’s Comfort Bags
Katie has been involved in every aspect of Nick’s Fight to be Healed Foundation. I know that if I ask Katie to text the group, meet to organize volunteers, fill in for a volunteer at an event, she will do it. And it’s not because it’s an obligation. Katie believes in the mission of this foundation. She truly loves being involved and emotionally connects to the kids. She has expressed interest in working with pediatric cancer patients as a nurse, and I know she is the perfect person to do this. Being a nurse in a clinic where children are suffering is not for everyone. You have to be able to do your job and emotionally support the patient and the family. Katie can do that!

Katie has been secretary of Nick’s Round Table, co-VP, and next year will be co-president. For the past three years, she has been a great captain for Relay for Life. She has become a leader without losing her empathy and joy of helping others. Katie is going to bring this group to the next level and I can’t be happier that she is one of the amazing leaders on the board next year. 

Erin and Katie at Autumnfest

Katie helping organized Family Hope Bags at St. Edward’s

Katie speaking at St. Baldrick’s fundraiser
Katie, I can’t say enough how proud I am of you. You are one of the reasons why I keep so involved with Nick’s Round Table. I am constantly inspired by your strength, your effectiveness, compassion, and leadership. You are very special to our family and know that Stephen’s teasing and delegating much of his work to you was part of the master plan! Learn from it and remember to delegate as well!
I look forward to working with you and have such high hopes for you as you grow into an even more amazing and loving young adult.
Congratulations on receiving the Teen Volunteer of the Year award. Your peers recognize how special you are! We appreciate all your dedication and hard work!
Look for more photos from our annual gathering at