Shen Goes Gold

groupphoto
L-R: Ron Agostinoni, Sarah Olsen, Kaitlyn Gilbert, Brittney Decker, Don Flynt, Amanda Hayes, Janine Cammarata

Today many at the Shenendehowa Central High School wore gold for September’s Childhood Cancer Awareness Month. Gold ribbons were handed to hundreds of students and Brittney Decker, president of Nick’s Round Table, spoke about the importance of raising awareness and the purpose of the garden.

Don Flynt, who was the principal at High School East for 20 years retired last year, and I had the pleasure to meet the new principal, Ron Agostinoni. The first thing Mr. A (as the students call him) mentioned to me is that he knew one of the kids whose picture surrounded the garden–Emily. He is good friends with her family and felt an instant connection to our cause.

He then said that he and Mr. Flynt met a couple times over the summer to help with the transition. He figured Mr. Flynt would start with all it took to run a school. However, one of the first topics mentioned was Nick’s Round Table, the importance of the Memorial Garden, and our mission to help kids fight cancer.

 

stonepresentedtomrflynt
Don Flynt honored because of his commitment to his students.

Today, in addition to raising awareness for kids battling cancer, we dedicated a stone labeled with the word ‘commitment’ to Don Flynt. He recognized that in the midst of tragedy, our young adults needed a way to take action. He provided the space, tools, and platform for them to be empowered to help others.

Don Flynt has always shown compassion and integrity, and I believe Mr. A has the same qualities. We look forward to working with him.

commitment

For all of our children who are in the midst of their cancer battle, we are right beside you. For those who have beaten this disease, we are ecstatic for you. For our children who have gone before us, we will never forget you and keep fighting in your name.

September is Childhood Cancer awareness month, but every day our kids struggle with this disease. Make a difference today.

Self-Care

yogablockandmat

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?

Chased Away Leukemia

 

 

chaseridetobehealed
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!

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

LukeStrong

lukeromanofinal

In 2008, our family supported Luke Romano at a Chair-ity event at Orenda Elementary School. It was an amazing fundraiser, and we purchased a chair that still resides in our house. Luke helped my husband, Lucas, coach soccer for our son, Stephen, and Luke’s brother, Marcus, who were in the same grade.

Luke was one year older than Nick. There are so many connections between the Romano and Cammarata families that when Nick was diagnosed and I told Annette and John, they were floored. I remember Annette crying with me on the phone and they immediately showed support by giving us advice and taking Stephen when we were at the hospital.

Luke and Nick hung out a few times. I so wish I had a picture of them together. Luke needed to go for a second bone marrow transplant, and he said he would if Nick did. Nick had every intention to do just that, but passed away before he had a chance. Luke would go on to battle for 3 more years and he passed away on August 28, 2011.

I still remember going down to the hospital knowing that Luke’s time was close. Lucas and Stephen came down and there were so many people there wanting to be in Luke’s presence. Before Luke passed he told his parents that he didn’t want a separate foundation. It didn’t make sense. He wanted to join together with Nick’s Fight to be Healed and support our mission.

His family has done just that. Luke’s Legacy organizes and supports our Family Hope Bags, and they provide two scholarships for students attending Niskayuna and Shenendehowa High Schools who plan to study equestrian science. Perhaps Luke’s greatest impact is Luke’s pillow that complements Nick’s Comfort Bag. When Luke was diagnosed, his aunt gave him this cozy down pillow, and Luke would always travel with it to the hospital.

That pillow is the favorite part of the comfort bag according to all the patients who get one. Luke battled cancer for seven years, relapsing four time. He lived a lifetime in his 18 years, but it will never be enough. The world lost such a beautiful and dynamic person when Luke joined my Nick, but his legacy lives on, and his impact far reaching.

Annette shares that this journey is for the entire family and although there are commonalities, each child’s journey is unique. Each family member has needs, and we need to provide a wide array of support–physical, medical, financial, emotional, and social.

Their hope is that we will be a voice and advocate for high quality, comprehensive support for families affected by childhood cancer. Being part of Nick’s Fight to be Healed helps the Romano family continue Luke’s Legacy.

Our children live on in our memories, the friendships and bonds they have shared, and the volunteers who choose to dedicate their time in their memory.

Thank you to everyone who read their stories, volunteer, donate, and give back. You have truly have had an impact.

Emily Always Sees the Upside of Life

emilyfinal

How can a child remain so positive when they are going through a cancer treatment? That was one of the things that amazed me about my son, Nick, when he was so ill. Even when he was so fatigued and couldn’t do anything, he still had a smile on his face. It seemed very important to him that everyone else was comfortable and doing all right.

Emily looks at life with optimism and sees goodness, instead of what may hurt. Knowing that the treatments will make them better can change a bad experience into a good one, but it’s still painful. Our children still cry, and they need to know that it’s all right to show pain, anger, frustration, and confusion. These emotions only cause more disease if they are bottled up.

But when your child smiles at you while in clinic, you can’t help but smile and be amazed at how strong and brave they are.

Emily’s family knows that cancer can take a lot out of a child, it can change their demeanor, and kids need extra amounts of love and understanding when this happens. Being showered with love in these tough times helps immensely. In addition, the generosity of people and groups help the patient and the whole family.

Parents follow their sick child’s lead. Right now Emily is in her maintenance phase. She is still getting medication, but she is on the road to being healed. That is a reason in itself for her to be positive, and when her family sees her smile, I’m sure they smile right back at her and feel blessed.

Taking Action for Ryan

ryanfinal

I don’t always get a chance to meet a child or young adult who is battling cancer and being treated at The Melodies Center. They know of the foundation and have received some of our services, but sometimes we just don’t get that chance to connect. I didn’t meet Ryan, but I had heard so much about him, and I knew that he was fighting hard to be healed, so he could continue on to college.

When Ryan passed away, I felt compelled to go to his funeral. My heart broke at the loss of Ryan, his potential, his handsome smile, the pain that I knew his family and his wonderful girlfriend, Jenna, were going through. I needed to hug his family and let them know that he would always be with him, and that I hoped they would have the opportunity to feel him when they were hurting.

Ryan has touched so many people’s lives in his 18 years in this world. It makes us wonder what he could have done had he lived and question why his life was cut so short. His family may ask these questions too, but they may never get an answer. What they do know is that they have received tremendous support through family, friends, counseling, and foundations. This helps them get through each day. More importantly, they know that Ryan is with them every day, just in a different way, and this keeps them going.

Ryan’s family understand firsthand that children and young adults battling cancer are the toughest, most strong willed individuals who never give up, despite the very rough times they go through. Parents, family, and caregivers must adopt that same mind set to support their children through their ordeal. This mind set is helping Ryan’s family as they miss him.

We lost a young man who had the chance to change the world. His spirit and memory urge us to now take action in his name. More funding needs to be provided to help children and young adults battle cancer. Donating to foundations like St. Baldrick’s and Alex’s Lemonade Stand, CureSearch, Children’s Cancer Research Fund, or Children’s Oncology Group ensures that your money directly supports childhood cancer research.

Sammie on Surviving Cancer

sammiefinal

I first met Sammie three weeks after I lost Nick. We had planned a fundraiser with the Mayo, Romano, and Sagnelli families at the 99 Restaurant. Nick was excited to get involved and give back. Then he suddenly passed. I was numb and in pain. When I walked through the door, I saw this darling little girl with tight brown curls circling her round face. She had happy eyes, and we connected from that day forward.

I have been through a lot with Sammie and have seen her ups and downs. My husband and I just brought Stephen back to college yesterday, and I have to admit, I was very sad and need a day or two to get myself back together. Plus, I think of Nick and the fact that he will never go to college.

So I wanted to focus on a survivor who would now be attending college, and I thought of Sammie, in addition to so many others who I will feature soon. Sammie wrote her thoughts about what we need to know about children with cancer and what gives her hope. It was so well-written and honest that I’m including her words.

Janine: What do you want people to know about children battling cancer?

Sammie: I want people to understand that the children who battle cancer, can and (God willing) do survive. I understand we often hear about children passing away and dying from cancer, and I’m hopeful those statistics will change for the better in the future. But we need to change our expectations of what a childhood cancer diagnosis means and stop associating it with death and sickness. We need to change our expectations of what a childhood cancer survivor looks like.

I was a child who survived cancer, became healthy again, returned to sports, began attending school again, whose hair grew back, graduated high school, and now will be attending college. Often friends and teachers are shocked hearing that I am a childhood cancer survivor. I am a very talkative and an extroverted person. When people find out they will make comments like, “I would have never known you are …,” their sentence trails off, but I know what they mean. They are surprised that I’m “normal.” To be fair, no one would know I survived cancer when I was 9 years old. I don’t walk around with an “I had Cancer” t-shirt. I feel like they expect a really introverted, quiet, sort of mysterious person as oppose to a happy and bubbly one. It’s important to understand that every survivor wears their trauma differently.

9918b-img_5435
Sammie gave back during and after her cancer journey. It heals and helps others fighting the same battle.

I understand my previous illness may be unknown to a stranger or at a first glance. But I am more than my illness. It does not define me. I wish people would really understand that childhood cancer survivors, or even fighters, are so much more than their illness. So much is constantly changing in a child’s life, and cancer is something they will move on from. I wish more people would know that ‘cancer kids’ have the possibility of returning to “normal” life and planning for a future.

Another incredibly important thing I wish people knew about children who survive cancer is that the pain isn’t “less” because it happened to a person when they were younger. It has to be understood that the childhood of a childhood cancer survivor is much different than someone who didn’t have cancer. I’ve discussed this with a therapist and the best way to describe it is comparing it to a tree. Imagine a full grown tree. The tree represents your entire life. The bottom or roots of the tree is where you started growing or your youngest age. As you get older you move up the tree. The earlier trauma happens in a person’s life the more it affects how the tree grows, or how you shape your life and the person you become. Because cancer happens to a person as a child does not mean it changes them “less” than an adult who survives cancer. It actually affects them and who they are as a person more so. And because I get asked this question a lot, yes I do remember my cancer, chemo, and surgeries. I for the most part I remember everything I haven’t already suppressed.

Janine: What give you hope/support to get through each day?

Sammie: At times it can be either really difficult or incredibly easy to find hope to get through the day. There are days I feel empowered and strengthened because I overcame my illness. I feel like I can do or be anything I want. On those days I feel like I am on top of the world, and on other days it feels like the world is on top of me.

I do suffer from PTSD as a result of my cancer. On some days it feels crushing, impossible, and confusing. It is very easy to get stuck on pointless questions of “Why? How? What?” Some days you have no choice but to sit with your thoughts and feel the pain all over again in order to let it go for the moment. Whenever I go for a checkup or a routine scan, anxiety usually accompanies it because I fear my illness returning. If I’m having a bad day I’ll calmly tell myself, “Sammie… You have air in your lungs and your heart is beating.. .You are alive… Cancer may have taken things from you, but you have today… and tomorrow… and the rest of your life….”

Although some days are nasty and feel unbearable, I take comfort in knowing I am incredibly strong. I find hope in the fact that I survived, and my struggles have made me incredibly tough and resilient. I have much more to live for, and I know I am capable of more than I currently believe.

Although my life was completely changed by surviving cancer, I find hope in knowing that everything I’ve been through is all in God’s plan for me. Things were meant to be this way and happen the way they did. I have hope in knowing I can love myself despite the physical and emotional scars cancer gave me. I used my cancer to make myself more passionate, ambitious, and determined in pursuit of my goals.

I guess you could say my biggest hope comes from the fact that I am alive.

September is Childhood Cancer Awareness Month–But Every Day Children Suffer

Today starts the daily campaign for this month to raise awareness about how many children are diagnosed with cancer–90 children a year just at The Melodies Center for Childhood Cancer and Blood Disorders at Albany Medical Center.
Today we need to understand the support that each and every one of those 90 children and their family need in order to survive a cancer diagnosis. It’s emotional, financial, physical and spiritual support.
Today we push to find a cure. According to the National Cancer Institute, the most common types of cancer diagnosed in children and adolescents are leukemia, brain and central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, and gonadal (testicular and ovarian) germ cell tumors. 
Nick Rychcik may not be familiar with these common forms of cancer, but he knows way too much about the cancer that for the past year has turned his life upside down. 9-year-old Nick was diagnosed with Desmoplastic Small Round Cell Sarcoma in October 2013, a very rare and aggressive form of cancer. His tumor was found on September 25. In addition to the surgeries, chemotherapy, radiation, and other painful procedures, Nick is currently undergoing treatment at Sloan Kettering Memorial Hospital.
Nick Rychcik and his mom, Kelly (photo courtesy of Elizabeth Fox Photography)
Nick’s procedure is called Intraperitoneal Therapy. Anti-cancer drugs are delivered directly into the abdominal cavity and are left there to bathe the cancer. This study called I-8H9 phase 1 has only been done on 20 patients so far. Nick will feel a lot of abdominal pressure, his breathing will be faster and heaver due to the large volume of fluid. Currently, Nick is home, but the treatment has caused him to be continually sick. He goes back to Sloan tomorrow and will get his schedule for three weeks of radiation. 
The Rychcik family is one of the 90 children dealing with a similar situation of being separated from siblings, parents, and friends. Nick should be school shopping and preparing to hang out with his friends at school, but instead is battling to save his life. 
Nick’s Fight to be Healed Foundation fights for Nick and is supporting this family to help get them through this difficult time. Nick is our warrior for Nick’s Run to be Healed 5K on Sunday, September 28, 2014.  Go to www.fighttobehealed.org to find out how you can participate and support our never-ending mission.
On September 13, the Capital Region Childhood Cancer Coalition is sponsoring a September Gold Family Day. This is for every family battling cancer or wanting to support a family with cancer. There will be a ton of fun events. Please spread the word about what we do.

Everyone is invited to come to this event. Please help us make it a huge success!