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.

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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.

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.