Creating a Ripple Effect

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Abby and Matt, celebrating life!

As we raise awareness this month about childhood cancer, we show the harsh side of it; the devastation, the heartache and pain that our children go through. The posts about childhood cancer facts are very much appreciated, because facts don’t lie. When we are faced with the truth, we can no longer sit back and be complacent.

There are many ways to create change and face a cancer diagnosis. Abby Sayles and her family have shown us a positive and powerful way to battle cancer that is not only effective (Abby is about a year cancer free), but also has caused a ripple effect across the cancer community.

I first met Abby and her family after she married her nurse, Matt Hickling, in a touching ceremony at The Melodies Center. Just this act alone started by the tremendous support Matt showed Abby, raised awareness around the world about what a child with cancer goes through.

Dance to be Healed began to celebrate that support and is now an annual event where children and their families get dressed up, dance, and take time off from their treatment and worries.

For a few years, Abby has walked in our July 4th parade and jumps right into the activity of handing out candy and bags. She truly teaches us that Nothing is Impossible. She is living proof of that.

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Abby always raises awareness in style.

If that wasn’t enough of a ripple effect, Abby and her family started a lemonade stand where she raises money for The Melodies Center and this year for Nick’s Fight to be Healed. Giving back builds community and provides strength to the families who open their hearts to the support.

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Abby, 100% healed and still giving back!

Community makes a huge difference in healing. I truly believe that Abby’s positive attitude helped her to heal. She learned this from her parents and the amazing staff at the clinic.

Now that Abby is done with treatment, she stays connected to her cancer family, because connection continues that ripple effect. The more people understand what a child goes through, the more they will help. When someone who never knew about childhood cancer sees what Abby and other kids have done, then they move forward to create change. Before we know it that ripple turns into a wave of action.

How will you create a ripple effect? What will you do today to help a child with cancer? Doesn’t have to be huge. One stone can cause a ripple.

Something about Springtime

There’s something about springtime, especially after a long winter. The birds chirp, the flowers sprout and flaunt their colors, and we cherish the warmth of that amazing sun. We look forward to the end of school and in my case Stephen’s high school graduation. We make summer plans and make every excuse to get outside.

There’s something about springtime when it comes to cancer diagnoses, especially for teens. Every year that I can remember there is always an influx of teenagers who are diagnosed between April and May. This year there were quite a few boys and it breaks my heart when we get 8-10 requests for Nick’s Comfort Bags in one month. Yes, it’s wonderful that we have teen volunteers to fill them and that we are able to support so many young adults, but that also means that 10 more kids have been diagnosed with life-threatening cancer.

June ends up being a very busy time for our volunteers. It’s a tough time of year with exams and graduations, but we know that a cancer diagnosis isn’t ever convenient and so we continue to fight.

On June 5, the Romano family once again spearheaded the LukeStrong Olympics at Shenendehowa High School raising over $4,000 and having 20 teams participate. The very next day we had teens and adults volunteer to cook at the Ronald McDonald House in Albany. The families who stay there have children at Albany Med who are battling life-threatening illnesses are have been born prematurely. Getting a good meal, especially having a barbecue, is essential to helping keep the family strong. Last Friday was Relay for Life and even though it was cut short by torrential rain and dangerous lightning, Nick’s Round Table teens and adult volunteers ventured forth to show our support. Sammie Sagnelli was able to walk her survivor’s lap before we rushed into the safety of the high school.

Some of the amazing supporters of Nick’s Fight to be Healed at LukeStrong Olympics!

Volunteers worked hard preparing dinner at the Ronald McDonald House in Albany!

And still we continue our quest to help children with cancer as we hold our spring Blood Drive this Friday, June 19 from 1-6pm at the Shenendehowa United Methodist Church. Children with cancer need lots and lots of blood and platelet transfusions! So we need your help to support this part of our mission. If you can donate blood, please stop by. You can also make an appointment at www.redcrossblood.org. It’s such an important part of what we do.

Always have to get a selfie with Sammie the amazing survivor!

Thank you to everyone for helping at Relay for Life, especially after the storm!

I hope you are enjoying spring, planting flowers and vegetables, exercising outdoors, basking in the sunshine or running in the rain. As you do, please think of the children who are in the hospital wondering how they got there and what this means for their summer.

We appreciate all that you do to help support Nick’s Fight to be Healed and our children!

Go to www.fighttobehealed.org to see how else you can help!

And the Winner is . . .

All of us because–
Angie Silipigno is Albany Medical Center’s Employee of the Year for 2014!
Nick’s Fight to be Healed Foundation’s Board of Directors would like to congratulate Angie Silipigno, The Melodies Center’s child life specialist for receiving this wonderful award. Angie was chosen out of 7,000 employees and she was nominated 16 times from us, other foundations, fellow co-workers, doctors, and families of children with cancer. There is no doubt that Angie makes a difference.
Angie with her twin girls celebrating the announcement.

What makes it more amazing is that people are beginning to realize how important her position is in helping children heal. Her title says it all–Child Life Specialist–Angie sees up close and personal what a diagnosis does to the child whether they can understand what is happening to them or too small to know anything besides the fact that getting a needle really hurts. She is one of the first people a family will meet after the oncologist has to deliver the horrible news. Her job focuses on the emotional health of the child battling, the siblings, parents, and extended family. A child’s life has been ripped apart by cancer and Angie’s job is to put their lives back together so they are strong enough to emotionally make it through.
Angie with her husband, Chris, who we can see is very proud of her and supportive.
When Nick was battling cancer, Toshiko Nonaka was the child life specialist. She made such a difference in Nick’s daily visits to the clinic. She not only brought him a bag of goodies that inspired Nick’s Comfort Bags, but she took a vested interest in Nick and how to make him happy while he was struggling. One of Nick’s best moments during his diagnosis was getting to meet Eli Manning and other players for the Giants. I will never forget the joy on his face and his brother, Stephen’s. The child life specialist made that happen.
Karen Patchell and Janine Cammarata with Angie during her celebration. Everyone from Nick’s Fight appreciates her hard work.
The emotional connection to the child life specialist and the obvious difference she makes is why Nick’s Fight financially supports this position that is only funded through donations and grants. But it’s not about the money. It’s about connecting with kids, with their families, emotionally staying strong when you see children suffering horribly. It’s giving of yourself despite the pain you feel at seeing families fall apart, children breaking down, and sometimes losing them. Angie brings sunshine to their lives and she celebrates their victories as well as holds them up when life just doesn’t feel fair.
Nick’s Fight to be Healed is dedicated to reducing stress and helping children heal during their cancer journey. Angie is our closest partner in this quest to help others. We couldn’t ask for a better person in be in this position right now and we thank her for all her hard work and selfless dedication. 

Remember September is Childhood Cancer Awareness Month.  Why is it that we need to have a month to raise awareness about a life threatening disease like cancer in children?  How is it that everyone in the United States isn’t clamoring for more childhood research, advocates or financial support for families who are clearly suffering?  
Five years ago I would have said because it hasn’t personally happened to me so although I knew of local families with cancer, helped them at fundraisers, I didn’t feel the full devastating effect until I lost Nick to cancer after a traumatic four months.  That’s not to say I think everyone needs to feel the pain and fear of having a child with cancer, but the awareness needs to occur because there are families losing their homes, since they can’t afford to pay for their child’s medical bills; there are families who don’t have heat in the winter, as they can’t pay for their oil to be replaced; there are families who don’t have the means to get their child to the hospital on a daily basis for life-saving treatments;  and there are families who have to quit a job so that one caregiver can take care of a child or teenager who can no longer take care of himself.  The reasons go on and on.
The Capital Region Childhood Cancer Coalition is a group of local foundations who have been placed in the same situation because of a terrible circumstance–our children were diagnosed with cancer and most of our children have died.  Those who are still battling or are in ‘remission’ fight side effects every day. So we felt that more had to be done based on our personal stories and the stories that we have been told by others.
The coalition’s mission is to
  • Increase public awareness, attention and focus on childhood cancer.
  • Educate, inform and provide solutions on local childhood cancer issues.
  • Support children affected by cancer, their families and the Children’s Hospital at Albany Medical Center.
  • Foster collaboration with various childhood cancer foundation, resources and organzations.
Our September goal is to unite local foundations to have daily events to raise $100,000 in support of the new dedicated Pediatric Oncology space at the Children’s Hospital at Albany Med.
This is in addition to our individual foundations’ missions to financially and emotionally support local children with cancer and their families.  It’s a daunting task, but together and with your support we can help children with cancer heal.  Please visit our website at www.crccc.co/ for all the information about upcoming events.
Nick’s Fight to be Healed Foundation’s largest annual event Nick’s Run to be Healed 5K is Sunday, September 29, so please register today at www.fighttobehealed.org
Nick’s Warrior, Parker Ragone, is being honored at Nick’s Run.  Parker is 4 and has been battling Leukemia since he was 2. Parker loves action heroes, especially the Hulk and Iron Man.
September we wear gold in honor of our children with cancer, who are more valuable than gold.  Raise awareness and save lives.