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.

An Amazing Generation of Cancer Fighters

 
 


There is a whole generation of young adults who are battling cancer.  Some are personally involved with their own diagnosis and fight daily against the raging side effects, the hormonal ups and downs of steroids, the uncertainty of their future, and loneliness.

Madelyn on left, Julia on right.

Today I went to The Melodies Center and visited with two young adults who have dealt with all of the above and more.  It’s only been two weeks since Julia, a 19-year-old who  relapsed, has woken up from being in a sedated state for one month.  None of the doctors thought she would come out of it as her organs began to fail.  But somehow Julia came back to see her mom waiting for her and amazed doctors and nurses welcoming her back.  In remission Julia now has to deal with aphasia which has affected her speech. Madelyn who is currently in treatment for Leukemia was in clinic and had shared a room with Julia a few months ago.  They have the same type of cancer, but lost touch after Madelyn was discharged.  I invited Madelyn to Julia’s room (with Julia’s permission) and both their faces lit up.  Madelyn accepted Julia’s hesitant speech and took off her wig so that they both displayed their beautiful bald heads. They talked about their treatment and how they wished the residents treated them as the young adults they are, not like little children.  In their own way they are raising awareness of how their generation–stuck between being a teen and an adult would like to be treated.  While they educate others, they lean on one another and erase that sense of loneliness that every cancer patient experiences.  They know what the other is going through and there is a sense of unity and healing that comes with that knowledge.  I’m so glad they have each other.

While Julia and Madelyn were reconnecting, another Julia and her friend Sophie were in the oncology clinic spending time with the younger patients as they waited for treatment.  They helped Esther paint a wooden heart with bright glitter paint, guided a sibling named Ryan while she made sand art, and kept 3-year-old Elsa busy painting beautiful birdhouses while I visited with her mom.  These young ladies and many others are part of Nick’s Round Table and they share the vision and goal to help these children heal.  They aren’t medical doctors (although some are indeed entering that field because of their experiences), but they spend time doing crafts, distracting children from their pain, and give each child a reason to smile while they are getting treatment. This generation of young adults know about loss, grief, heartache, and they are doing something about it so the next generation can have a more positive experience.

Raising awareness and educating the public about what children with cancer go through and what can be done is a major part of the foundation’s mission. Through a recommendation and references, my son, Stephen, was chosen to be a News Channel 13 Kids Who Care, because of his dedication to Nick’s Round Table and helping other children with cancer.  With help from fellow Round Table members PK, Alyssia, and Tyler, he told his story and why he fought against cancer.  Stephen, every member of Nick’s Round Table, and every young adult who raises money, awareness, holds a friend’s hand, comforts others, and fights cancer are making a difference in their own lives and the lives of children. 

See Stephen’s video below:

http://www.clipsyndicate.com/video/playlist/17571/4001330

They are the Amazing Generation, because they aren’t standing back and letting life take over. They are taking on life and living it fully, with intention, and dedication.  Whether these young adults are fighting for their lives, spending time with sick children, or spreading awareness, they all have a hand in winning the war against cancer and I’m proud of them.