Giving at the Table

First, I want to give thanks to Karen Patchell, one of the original board members of Nick’s Fight, yoga instructor, and pet therapist, for the clinic for making all the arrangements for our Thanksgiving holiday bags. She is such an integral part of this organization that it literally wouldn’t run without her.

Last Friday Karen and I attended a Spring into Health cooking class, which focused on healthy vegetarian options for Thanksgiving. It was in the chef’s house (Anouk) and not only was her kitchen amazing, but she and her cooking partner, Danielle, were warm and welcoming. It was like coming home from a long trip and being wrapped in a warm blanket and given hot chocolate.

When we came to the table, there wasn’t a rush to chomp down the food and get to the next thing. We savored each dish, gave thanks for being together with some people we knew and others who became friends over dinner. It made me think about how I came to the table. Do I give thanks for the food I eat or do I treat it as something to get done?

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Food is an integral part of our life. Having a full stomach and being nourished sustains our mental and physical well being. Eating delicious together can also be healing. When we sit together in a loving, grateful manner and take the time to savor our food, it becomes a happy and wonderful experience.

After I ate dinner with so many fantastic people, I was happy. I ate healthy foods and felt a sense of community.

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Annette Romano, fabulous board member, and amazing volunteers hard at work.
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Brittney Decker, President of Nick’s Round table, her friend Sonya (left), her sister Lindsay (right) volunteered their time to help out!
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Karen Patchell opening her home to organize the assembling.

This is exactly what these wonderful women set out to create and provide for our families at The Melodies Center. They lovingly put together bags of food that will provide satisfying Thanksgiving meals for our families battling cancer. They understand that giving at the table as well as giving of their time is a heartfelt way to make others lives easier. To give is to receive happiness.

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So from our foundation to your table–we wish you a Happy Thanksgiving and a month filled with goodness, kindness, and positive steps to a healthy family.

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Self-Care

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The countdown for Nick’s Run is 7 days. It’s been a whirlwind of finalizing all the details and promoting the event to make it the biggest one yet. Part of the promoting is being on the radio and TV. I had the pleasure to talk with Marc Kaplan with Siena’s station 88.3.

One of Marc’s questions was what advice would I give to anyone whose child is battling cancer. What advice for the parents? My biggest advice, which is also the hardest to act on is self-care.

For the four months that Nick had cancer, we were in the hospital a lot, and I usually stayed with him. Stephen was only 10 and wanted his dad. I didn’t exercise, I barely left his room, and my diet was terrible. I remember wishing that someone would come and pluck my eyebrows. I was afraid that if I wasn’t there something would happen to Nick. A couple times Luke stayed, and it was wonderful to spend time with Stephen, but I often felt that my heart was split.

Imagine doing this for years. Any parent would do the same and eventually it takes a toll on our bodies, mind, and spirit. It also affects our ability to make decisions. I think I was on autopilot, and taking a break even to sit in silence or do the yoga practice that I do now would have benefitted all of us.

So during this month of Childhood Cancer awareness, we know that taking care of your sick child is the priority. But remember to take moments for yourself to read a book, write in a journal, take a walk, do yoga, exercise, and eat well. Do what nourishes you and gives you moments of peace. It will make a difference in the long run.

What are other suggestions for self-care?

Community

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It starts with devastating news and your world shrinks in on itself as you realize that nothing will ever be the same. Your perspective shifts and what use to bother you is no longer relevant. You cherish those precious moments with your children, your spouse or partner, family, and friends, because they may never happen again.

Then you are joined together with the staff at The Melodies Center and your world gets a tad bit bigger and you are held tighter by a larger circle. Then those who have walked in your shoes reach out and take your hand, and you finally appreciate the unbelievable community that has taken you in and feels the same fear, pain, worry, and heartbreak with you.

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This community also cheers you on when the news is promising. They are your biggest fans, your strength, your rock, your cheerleaders.

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And no matter what they have going on, when you need them, they are there for you 100%, no questions asked. They hold you up. They are your foundation. They come from all walks of life, because cancer doesn’t care how rich, poor, tall, short, successful, shy, or healthy you are.

But we care and that is what makes all the difference. There are volunteers who have put aside their own problems, sadness, losses, and hurts to help raise others who are at their breaking point. This is community. This is what keeps me going. I am thankful for everyone who helps with our fundraisers and especially this run.

Register now for our 8th annual Nick’s Run to be Healed 5K. Tomorrow is the deadline to get the dri-fit shirt. For sure that is incentive.

But really what matters is that we all will come together as a community and be there for one another. That is what we do for no other reason than because we care and September is our month to raise awareness.

www.fighttobehealed.org

Chased Away Leukemia

 

 

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Janine and Chase at the Ride to be Healed Motorcycle Fundraiser

If ever someone would be called a miracle baby, Chase would be it. Today is Chase’s 6th birthday! Happy Birthday, Chase! But he had been fighting cancer since he was 1. For his whole life, cancer is what Chase has known. He has been on the brink of losing his battle to moments of reprieve, only to be thrown back head first into the foray.

That type of rollercoaster ride would throw any family into overdrive and drop them into exhaustion. It takes a team to make the right decisions on treatment, takes faith to hope you made the right decision, and takes a community to hold you up when those decisions don’t go as planned.

The hardest part of being a parent with a child fighting cancer is the second guessing. Decision-making plays with your mind as does the exhaustion from sleeping in the hospital with your child or having to still work when you are worried out of your mind. It doesn’t matter if it’s the child’s other parent there. As a mom, I needed to be with Nick to make sure that nothing went wrong.

But despite our best efforts, things can go wrong. Chase had so many side effects from his transplant, and chemo. This poor child suffered without really knowing why he was suffering. It was what he thought life was like. That is the horrible part of cancer. These medicines that should help tend to hurt more than the cancer.

Through the power of faith, family, commitment, determination, and community, Chase pulled through. Now he is a little boy who fights with his sister, knows how to smile to get an extra treat, and enjoys running around. So many people and foundations helped his family get through, but his family was the backbone.

Chase, I hope you enjoy your birthday and have an extra piece of cake for me–tell your mom I said so! Love you and your family!

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Peyton, one of Chase’s siblings he gets to harass! I see those bunny ears!

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.

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.