Muscle Memory

I couldn’t let the day pass without sharing a story about childhood cancer awareness month. Grief is like muscle memory. Your body remembers as easily as the change in seasons. As fall comes, we begin to crave hot apple cider and donuts, the crisp air, and early nights.

This is the time when my most damaged muscle pines for what has been lost. That muscle memory kicks right in at the beginning of September. The first day that Stephen had to go to school by himself without his big brother. Their first birthdays separated, the first Halloween dressing up on his own, the loss of innocence, the pain that seeps back in as stealthily as the leaves begin to change.

Despite all we do to bring about change, it sometimes feels that not enough is being done. No matter how much good I am surrounded with and all the support and love that I am given, my heart still skips and flutters with loss when I think about Nick.

Like so many other families, cancer took away one of my biggest joys, one of my greatest purposes in life. And it just sucks.

There are times when muscle memory is a good thing. For anyone who has lost a child, every season and every anniversary brings the heartache back.

September is Childhood Cancer Awareness Month, but every day I don’t have my son. So every day we should work like hell to find a cure, give comfort, show love, and make a difference for a child battling cancer or any type of life threatening illness. That is the kind of muscle memory everyone should have.

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Our family September 2008.

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.

Milestones

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Last night I finally watched Guardians of the Galaxy 2. I thought of Justin and how much he loved the comic book movies and wanted to see this one. Then I thought of milestones. Justin passed away on January 27, 2017. He wasn’t here for the opening night of this movie or for the rest of the many more coming out this year.

Justin would be going into his junior year. It’s another milestone that repeatedly breaks his mom’s heart. These milestones that hit us like a ton of bricks will continue for the rest of our lives.

Once the college graduations of Nick’s peers were over, I thought there would be a reprieve. However, then the jobs come, the weddings, and the babies. There will always be a milestone that will bring up the pain of losing my son to cancer. It doesn’t lessen the joy I feel for those who are living their lives, it just another hurt that I carry with me.

Looking at Justin’s beautiful smile, you know he was full of life. He loved his mother, his family, his books. Today, I remember Justin, because of all what he taught us, and also because of his potential that was cut short by cancer.

We cannot turn away from what children with cancer go through. We have to raise money for new and improved treatments that provide less side effects. We need to support the families whose lives have been split by this disease. And we absolutely need to support the parents and kids who have lost a member of their family.

Take action and spread the word. Much love to Justin, his mom, and family.

Emily Always Sees the Upside of Life

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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.

Love for Liam

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Liam has had a long and hard battle. He has relapsed twice and had to go to Rochester for a bone marrow transplant. We are lucky in that Golisano’s Children’s Hospital is an option for transplants, and young adults, such as Kayla, who go to college in Rochester take it upon themselves to bring comfort bags to patients and visit. Kaya met Liam and helped him get through that hard time.

I first met Liam and his mom when he was inpatient at The Melodies Center in Albany. I walked in, and Liam was watching a cartoon show on TV. He was totally engaged in it, and so I talked to his mom for a bit about our kids, what Liam was going through, and just life. Parents need a break to take care of themselves, reset their frame of mind, and get fresh air. I remember never wanting to leave Nick, and the only time I did was if my husband was there with him. I felt like I had to do everything, and it wore me down.

There is nothing wrong with taking time to go for a walk, getting coffee with a friend, finding a quiet spot and breaking down. If we don’t take care of ourselves, then how can we be mentally and physically fit enough to care for our sick children and make critical decisions? It is not something a parent should feel guilty about and yet we still do.

As we spoke, I pulled out a Lego set, and BAM! Liam’s eyes caught mine, and his face split into a huge smile! Apparently I hit the jackpot. Liam loves Legos. It takes a small gesture, the touch of a hand, a hug, a gift, or a word of encouragement that can make a child’s day brighter. I also gave Liam’s mom and his sister some lotion and body spray. Nothing like some body care products to brighten a gal’s day! But to have something fresh and new to give hope is so important!

This is why we work so hard–to bring a smile, to give hope, to make a positive difference in someone’s life. Liam’s mom knows that these kids are the strongest, bravest, and wonderful fighters. This is a common theme that all the parents have said about their kids. They endure more than most grownups could. They are true heroes. Seeing other kids getting through their journey and thriving, the medical staff, and their faith helps.

Of course visits from friends and someone reaching out a helping hand can go a long way. What can you do today for someone you know battling cancer? Don’t wait until tomorrow or think that someone else is doing it. You don’t know how your caring gesture might impact that person. Show love. You may just save their life.

Markel–Living Life Her Way

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Imagine being in the midst of your college life, finally reaching toward independence, figuring out who you are as an individual, having fun meeting new people, and suddenly you feel that something is wrong. As an athlete, Markel was in good shape, but she began to feel ill and out of breath.

Now imagine that she is immediately thrust into a world of cancer, horrid medicines, no longer attending classes, and has to depend on her family once again. Her brush with college life and all the fun and self-discovery that goes with it has been shattered.

But Markel now has a new path of self-discovery. Yes it’s one she never would have thought to venture down, but has done so with her head held high, with a positive perspective, and always a hand reaching out to help another child, teen, or young adult battling.

I always see photos of Markel giving back with fellow cancer survivors like Rachael Murray and her Trending 4 Fashion show, or I see photos of her at the clinic with other survivors like Dante or Justin. Her smile makes you feel like everything is going to be all right as she gives you a big, warm hug.

Markel has had her ups and downs with her treatment. The complications have been numerous, including infections, seizures, and allergic reactions to transfusions. Markel was in remission, but in June 2015, she relapsed and on October 7, 2015 (which is Nick’s bday), she had a bone marrow transplant. Even out in Rochester, Nick’s Fight supported Markel and her mom and volunteers visit. Markel’s final biopsy showed no leukemia or Philadelphia chromosome present!

Markel knows that the support from staff at The Melodies Center, family, friends, and new cancer family friends helped her get through. Her family’s faith gave them the strength they didn’t know they had.

So where does Markel go from here? Children are extremely brave and strong whether they are 1 or 20. Markel knows that help is needed. Advocacy, funding, research, and education are essential for finding cures and making treatment less invasive to reduce long-term side effects.

Along with taking college courses, Markel takes action by volunteering for St. Baldrick’s and other events that raise money to help children and young adults fight cancer. Markel is part of our world’s future. That thought makes me smile very brightly, because I know we’ll be in great hands.

Little Lucas

lillucasfinalI call him Little Lucas because even at his young age, he has had an impact on our world, just as Luke Romano had made a gigantic ripple in our lives.

I remember seeing Little Lucas in photos with Kendra Sisco for the Leukemia & Lymphoma Man & Woman of the Year campaign. He clung to Kendra and clearly looked up to her as a role model and perhaps a big sister. He and his family have been involved in so many fundraisers and events. Little Lucas is a positive beacon for anyone struggling with cancer.

Little Lucas is a strong boy and very resilient. He has fought hard to get into remission, and he still has the energy to be a kid. That is probably one of the best words of advice to give to someone if their child has cancer. Keep life as normal as possible. Keep your child involved in their regular activities if you can, and they are healthy enough to do so.

I remember when Nick tried to go back to swimming. It was the middle of summer. He already had so much chemo. His teammates were excited to see him and were going to do a relay. I encouraged Nick to join them, but to not go overboard. Nick took off, swam his lap,  got out of the pool, and vomited. His life had changed, and he never got back to the pool. Thinking of this story really breaks my heart, so to see a child like Lucas being able to do what he loves is promising. It keeps him emotionally strong knowing that he can get back to what he always did before cancer.

Little Lucas’ smile, laughter, and energy provides hope for his family. Look at that adorable face! How can you not smile back at him? The support staff at The Melodies Center has been key to getting them through their most difficult times. Telling people you need help and letting them support you is essential to maintain your strength to get your child and family get through this journey. We cannot do it all and luckily there are so many resources to help children like Little Lucas heal!

Bella’s Believers–Warrior for Nick’s Run

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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.

Sammie on Surviving Cancer

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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.

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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.

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

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.