Flow to be Healed Yoga Program

Announcing Nick’s Fight to be Healed Foundation’s new Flow to be Healed Yoga program at The Bernard & Millie Duker’s Children’s Hospital in The Melodies Center!

yogablockandmat

One of our biggest missions is how to reduce stress for the entire family when a child is diagnosed with cancer. We have focused on helping with financial needs and emergency items for initial diagnosis, and anything that will distract, comfort, and keep a child connected to those they love. It’s healing, effective, amazing work.

karenandbella
Karen Patchell, creator of Flow to be Healed yoga program at The Melodies Center doing a pose with Bella Caruso, while she is receiving chemotherapy.

But when you can teach a child that everything they need to fight stress, fear, pain, and frustration is within, then you empower them to be the captain of their own vessel. They have an internal tool that they can literally use anywhere! Bella loves the games and the stretching. She even showed her mom some of the poses when she got home!

Karen has been a part of Nick’s Fight to be Healed Foundation since its inception. A second mom to Nick and Stephen, she has dedicated much of her life to helping kids with cancer. When Karen decided to become a Registered Yoga Teacher (RYT) for children, she found her calling. She slowly brought yoga into The Melodies Center with fun games like blowing up a balloon to teach about breath or sharing books on yoga that featured different animals and how they represent yoga poses.

This was positively received by the staff at the clinic, and the program began on Friday February 17, 2017.

yogasetup

Not only is the dragon on the mat a symbol of our foundation, but it is a focus point. Focusing on an object or stationary point is calming, because it stills the body and brain and helps maintain balance in standing poses. It also allows the children to move their bodies in a safe way instead of looking around at distractions.

happytree
Karen standing in tree pose with Amelia and Bella.

Amelia pictured in purple was one of Karen’s first students and was thrilled to be there for the first gathering. Her mom says, “She LOVED it and I think it is great….it’s something relaxing for the kids to do but fun as well.”

Not only is yoga fun, but it helps the children deal with the uncertainty and pain that can come with cancer treatment. Karen teaches a type of breathing called Lion’s Breath where you inhale, then open your mouth, stick out your tongue, and breathe out with a roar. Concentrating on breath, takes their mind off of the anxiety or discomfort of getting their port accessed, for example. The action gives them control in a situation where they don’t have much at all.

Rob Saba, Director of Development, Grateful Patients and Families at Albany Medical Center, happened to be giving a tour when he came upon the yogis practicing. Rob shared how this program provides not only much needed distraction, but socialization and interaction, which helps heal.

 

twistedpyramid
Anyone can do yoga. Even a child connected to an IV pole.

A child’s cancer journey can last up to three years and sometimes longer. Angie Silipigno, Child Life Specialist, at The Melodies Center is excited about this program because they are always looking for new and innovative ways for children to improve their experience. Nick’s Fight to be Healed Foundation has always recognized that it takes more than medicine to heal a child.

Angie writes, “As I observed the first session of Flow in clinic last week, I saw wonderful things happening . . . Two young girls socializing with one another, engaging in physical activity despite the presence of tubing and IV poles, the passing of time in a positive way, exploration of their bodies, and above all, lots of laughter.  One of the best parts of this program is that it can be used with any age patient, as well as parents and other caregivers . . . At a time when a patient may be feeling self-conscious about their bodies or their physical abilities, this can be utilized to help them become more aware of their body using breathing, relaxation and stretching to establish an improved level of comfort and empowerment . . . Karen has a warm and welcoming presence. She has such a natural ability to assess a patient’s comfort level within a brief moment and meet them right where they are.”

ameliaandbellatree

That’s the healing power of yoga. Accepting where you are at the present moment and making the most of it. Despite the fact that these children are battling cancer, they can heal through connections, yoga poses, and laughter.

 

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.

hopebag

There are essentials like shampoo, conditioner, body wash, lotion, hand sanitizer, hair brushes, toothbrushes, toothpaste, deodorant, hair ties, laundry detergent, and chapstick.

hopebag8

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.

hopebag7

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.

hope-bags6

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.

hopebag10
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.

hopebag11
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.

hopebag9
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.

Bella’s Believers–Warrior for Nick’s Run

Isabellafinal

In June 2015 just two weeks shy of her fourth birthday, Isabella was diagnosed with cancer. She had to stay in the hospital for 15 days. When a child is diagnosed, many times they don’t get to go home immediately. The entire family is thrust into this foreign world, not knowing the language, and trying to find your way out of this nightmare.

Fortunately for Isabella and the children who are treated at The Bernard & Millie Duker Children’s Hospital Melodies Center, there are many different professionals who help. A child and their family will initially meet their oncologist, who essentially becomes like a part of their family. Then there is the child life specialist and the social worker who acclimate everyone to this new world, and the nurses who not only help with treatments, but soothe and encourage. Within a day or two of getting diagnosed, a family receives Nick’s Fight to be Healed Family Hope Bag, filled with essentials just in case of a situation like Isabella’s.

You meet so many people on a cancer journey that it’s hard to keep track. Isabella’s parents felt it was very important to keep life as normal as possible for their daughter. They have kept their family and friends close and have utilized support groups. Getting involved with Nick’s Run to be Healed with Isabella being 2016’s Nick’s Warrior has given them another connection to amazing and supportive community members. They explain that it’s important to remember to enjoy and embrace all the little things in life and to celebrate and create as many wonderful memories with your family. Sometimes life gets so hectic, Isabella reminds us that at any time, our lives can change.

Her family believes that staying positive and keeping routines help make every day feel “normal.” It’s OK to cry, scream, yell, laugh, smile, and enjoy life. It’s all part of the journey.

They know firsthand that cancer can turn your life upside down, now matter your age. When you watch a child go through treatments, pokes, scans, and take numerous medications, it makes you realize how strong they are. Isabella’s parents want others to know that kids are resilient and thrive on the positivity and love around them. Cancer doesn’t define them. It is only one piece of what makes each one of our children extra special.

If you want to join Isabella for Nick’s Run to be Healed 5K, it’s on Sunday, September 25. Her team is Bella’s Believers. Go to www.fighttobehealed.org for more info.

Celebrating Life

Abby and Matt’s First Dance Celebration was on November 16. The response to the news coverage is absolutely mind boggling and exciting. Raising awareness for childhood cancer is paramount to getting more funding for research and really understanding what our children need during a diagnosis and after treatment.
Abby has learned the lesson of friendship and helping others through her nurse, Matt.
That being said, this event wasn’t about the “marriage” between Abby and Matt, which really was a selfless act of compassion and support. It was about giving love to a 4-year-old girl who has cancer. It’s about having the courage to face a disease that you have no control over. It’s about hoping that your child will beat cancer and grow up to go to college, get married, have children if they want. Basically to live their own life. It’s about celebrating their good days and rising them up on their bad days.
Mom and daughter getting the chance to dress up and take a break from treatment. Just beautiful.
As a parent of a child who died from cancer, I am forever grateful to everyone who reached out to Nick and made his days extra special. I am thankful for the nurses who made a big deal that they got to take care of him, to the residents who sat and talked to him about his life, his interests, his fears. I am in awe of the nurses, social workers, and doctors who celebrated him becoming a teen while he was in the hospital on his 13th birthday. I am humbled by the child life specialist who paid enough attention to know that Nick loved the Giants and not only got him a sweatshirt, but tickets to the Giants practice session, so he could meet Eli Manning.
Cotton candy is a must at every celebration!
These memories are priceless and get me through every day that I miss my son. And that is every day. Every single day I miss my child who is no longer with me, but am so glad he had these moments.
Creating smiles and laughter heals.
These memories are a huge part of the reason why I volunteer most of my time raising money to help fund the child life specialist position at The Melodies Center. This is why Nick’s Fight provides services to improve children’s lives, to make them happier, and smile more while in the hospital.
Sometimes the parents need just as much of a break as the kids, helping to keep that strong foundation.
It’s why we don’t care if we raised money at Abby and Matt’s event. It was about giving these children a beautiful, fun evening in a safe and non-judgmental environment.
This event created precious moments to celebrate and enjoy life.
Matt & his wife, Karli

Abby formed a powerful bond with Matt’s wife. This friendship will last forever.

I am grateful for Matt, Abby, Courtney, Angie,and Abby’s family for trusting Nick’s Fight to be Healed Foundation enough to give them this night.

L-R: Courtney Hill (social worker), Kendra Sisco (cancer survivor), Angie Silipigno (child life specialist)
I am blessed to have met so many children who have taught me to follow my dreams and live every moment in love and acceptance. 
 I wish Love, Courage, Hope, Life, Peace to all of you.

Social Interaction and Marriage helps Adult with Cancer Heal–Same for Children!

 I heard on CNN this morning that married couples who had one partner with cancer had a higher chance of surviving than single, widowed, or divorced people. Their conclusion was that social interaction and human connection play a huge factor in whether adults can be cured of cancer.  Well the same goes for children.

Parker loves hugging his mom, Cortney.  I love how he holds her cheek!

When I was in the hospital with Nick, I heard sick babies cry for their parents night after night after night. Overworked, the nurses carried them and tried to keep them close, but sometimes that wasn’t enough.  There were many times when I almost got up and rocked those babies to sleep. It broke my heart.  I’m sure it broke the heart of the parents who had to leave their children at the hospital for whatever reason.  Maybe it was because they were single and had other children at home or they worked the night shift and had to pay the bills.  I don’t know and don’t judge.

All I know is that healthy children need love, nurturing and contact, so imagine how much a child with cancer needs.  Even at 13 years old, I cuddled with Nick on the small hospital bed and we found comfort in one another’s presence.  Children need their parents to be with them, and they need other trusting adults to form a bond, so the parents can work, speak with the doctors, get some rest, and take care of the rest of their family.

Parker knows that his dad, Adam, is his rock and gives him strength.  That connection is amazing!

Whether at clinic or in-patient, it’s the social workers, the child life specialist, and the nurses who form that bond.  Angie is the child life specialist at The Melodies Center and she works with every child who comes through those doors.  She helps relieve their fears about procedures and treatments and she knows what they love to do, who their favorite TV character is or their favorite sports team.  Michelle and Felicia are the clinic’s social workers. Michelle works full-time and Felicia is part-time.  They also provide emotional support, plus resources to help the family navigate the cancer world.  These women work with 700+ children and their families a year.  Nurses give the children the treatment they need to survive. They watch them like their own and keep them company when a parent has to talk to doctors. Everyone at the clinic connects and bonds with children and they feel the loss when a child dies and celebrate when a child is done with treatment.  They have laughed and cried, hugged and held these precious children. Social workers, nurses, and child life specialists are all essential to the emotional and physical well-being of a child with cancer.

That’s a lot of support, but these families still need help.  They need the financial support that foundations like ours give to keep positions like the child life specialist and social workers.  Some of those positions at The Melodies Center are funded by foundations and donations.  Families need financial resources to help pay bills, so that they can stay with their child in the hospital.  Parents needs hugs and hands held.

There is so much more than medicine to get through a cancer journey.  It all comes down to showing others how much we care, holding one another, and appreciating the people in our lives.

Remember September is Childhood Cancer Awareness Month!
http://www.fighttobehealed.org

Clarity Through the Rain

Nick’s Run to be Healed 5K was yesterday, September 30.  All week I fretted over the weather and the number of participants that would come despite the rain. This is Nick’s Fight to be Healed Foundation’s largest fundraiser that determines how much we can grant to The Melodies Center in support of the ever important Child Life Specialist position and how many families we can financially support through the rest of the year.

Yesterday morning, I worried that we wouldn’t get set up in time and then the rain came, people got wet, and I’m sure many decided to stay home.  I was upset that it wouldn’t be enough–that we could have done more. 

But as I walked around talking to people (I could do this because all the fabulous volunteers had everything under control) I heard comments like: the event is well organized, look at all the great food they give, I love the duct tape wallets, the shirts, the carnival. But even better than that, was the fact that participants came up to me thanking us for helping their family or making a difference. The flow of love and support was outstanding.

I saw kids laughing, runners warming up, people hugging, bubbles flopping in the rain. I saw life moving forward and people supporting one another despite the rain. So I relaxed realizing that everyone at the event, everyone who devoted their time and money knows how important it is to fight cancer, raise money, and cause change.  But they also understand or learned that life has to continue, you have to live life, despite the pain that you know children with cancer are dealing with. They have to be able to have those moments of happiness and cherish them as these memories are what carry us all through the really tough times.

Nick’s Dash Participants running for a special cause!

So I thank everyone who made the run a huge success on so many levels and for bringing laughter and hope to families despite the rain.