Childhood Cancer Awareness–First Day of School

Today was the first day of school, and I love watching the neighborhood kids take photos and hop on the bus for a new year of excitement and learning. Some may be going to a new building or starting at a different school. Some may connect with old friends or meet new ones. No matter what, it’s a happy day filled with joy and probably some anxiety.

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First day of school in our new house when the boys were 8 and 6.

Nick was diagnosed with leukemia in the summer, so many of his school friends never knew he was sick. Social media wasn’t readily available. We updated family and friends through the CaringBridge website, but when school came around, Nick only went on his first day. No one understood how ill he was. He had been accepted for the DDE program, since he wanted to be a technology teacher, but eventually he had to drop it as he couldn’t keep up with the work.

We hired tutors, but he was so fatigued, he struggled with motivation and learning. Shenendehowa School District was wonderful in that they gave him the basic requirements for homework, but the isolation and missing his classmates was very hard.

It was difficult for Stephen as well, since he and his brother would have been in middle school together. Instead Stephen went on the bus alone, and they missed all those possible memories together. When we lost Nick only two months into the school year, it rocked the school community.

Cancer changes the formative years of children. Losing a classmate is traumatic. Losing a sibling is life-changing and devastating. The ramifications don’t often show up until years later.

When a child with cancer attends school, they deal with side effects, possible infections from a compromised immune system, bullying, isolation, and misunderstanding. A child doesn’t have to look sick to have cancer, so it’s important to create empathy and educate students on what a child with cancer or any other chronic or life-threatening illness is going through. What an opportunity to teach compassion and make a difference in someone’s life.

Besides missing out on so many wonderful memories, the world lost the potential of Nick, someone who wanted to use technology to help others, who enjoyed working with younger children and making them smile.

Today I remember all the children who are no longer with us and their parents who struggle with those firsts every single year. And I send support and hugs to our children in treatment who missed their first day. I hope you get back to school soon.

Be aware that someone might be struggling more than you know. Show compassion and you might give them that reason to smile.

September is Childhood Cancer Awareness, but every day is the chance to be kind.

September-Childhood Cancer Awareness Month

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This is the last family photo we have of us together. It was Labor Day weekend 2008, and our family convened to share the love and laughter that has always carried us through hard times.

Nick had developed an infection, had appendicitis, and spent most of September in the hospital. It’s like a time warp. The world continued around us, people came and went, but we were stuck in this cocoon of uncertainty. I had always assumed Nick would survive, but with the heavy doses of methotrexate he had received, the infection became life threatening.

As a parent of a child with any life threatening illness, it’s very difficult to make the right decision. We were exhausted, scared, and not familiar with this disease. We had multiple doctors giving their suggestions and sometimes it was like throwing a dart. Nick continued to decline, but we still rallied surrounded by hope and the need to believe that he would be alright.

September is Childhood Cancer Awareness month. It’s one of my lowest months of the year, because my heart remembers how much Nick suffered. I didn’t journal much in that month and really I don’t want to remember the details.

It is 10 years since Nick battled cancer. Time doesn’t heal, and it doesn’t make it acceptable that I lost my oldest son. It doesn’t mean I’m over it or that I’m always OK.

10 years later, I’m living with Nick’s loss beside me. Sometimes the grief is a burden I have to carry, and it weighs heavily on me. Other times I can stand tall and walk alongside it and hold others up.

I share this because I want those who have lost their child to know that I am here with them. I will walk alongside them, so they know that some day they will be able to walk alongside their grief. Grief is chronic. It flairs up, it eases off, and then ruptures into painful boils, scabs over, and starts again.

I may never be whole, but I can live a fulfilling life. You might not believe it right now and that’s OK. I’ll be with you through this journey no matter what point you are at.

Taking action, raising awareness, demanding better treatments for our children battling cancer is the path of those who are on this journey with me. September is Childhood Cancer Awareness Month, but every day too many children are diagnosed.

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

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.

Kharismatic Kendra

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Kendra jumped into fighting for her health just like everything else she does–full force. I remember meeting the entire Sisco family at Mocha Lisa’s when they contacted me about Kendra having her 16th birthday party and wanting to make it into a fundraiser for the foundation and The Melodies Center. Her parents, George and Sue, and her big sister, Kailyn, all were there. I could tell immediately that they had a strong family unit.

Kendra had a huge bash and it was the beginning of her philanthropic lifestyle. I believe she has learned it from her parents as they are both very giving and have that ‘get it done’ attitude. Kendra then became part of Nick’s Round Table, which had a huge part in helping her connect and educate students at Shenendehowa High School about teens with cancer. Our perceptions of what kids with cancer should look or act like is very varied. Kendra showed that bald or hurting, she could still be involved, even after missing so much school.

Kendra was co-vice-president of the round table and was Leukemia & Lymphoma’s Girl of the Year in addition to other events she was involved in. Everyone deals with their cancer diagnosis however they see fit and what feels right for them. Even now that Kendra is locally attending college, she recently came to Nick’s Run to be Healed with her family in full force and a powerful team of supporters for Kendra’s Kure. Her cancer journey has led her on a gratifying path.

Kendra’s parents have shown how important it is to make sure your child knows that they are not alone. There are many loving and caring people willing to help, share and advise.

George and Sue express that, “Knowing that there are cures for many of the illnesses and that there are still good people in the world get us through. The people we have met including nurses and specialists will be friends forever. Also giving back to others and seeing it make a difference is empowering.”

We are thankful for Kendra’s health and to have her family’s support!

 

Energetic Amelia

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I first met Amelia at the 2015 Abby and Matt’s First Dance Celebration. She and her parents sat with me at our table. Amelia was a bundle of energy and to be honest, I didn’t even know that she was a cancer patient. She danced and hugged the other kids and had a fabulous time.

Her mom wants everyone to know that cancer is not contagious. Educate your children so when they see someone in school who is bald or sick, they don’t point and whisper. They are going through enough. Let them be children. Don’t put them in a bubble as much as you want to, for someday they will be healed and back into the world. Keep day to day as normal as possible. This is their life, their memories don’t make them all sad about sickness!

As parents we need to protect our children and watch what other people say in front of them so they aren’t scared. They listen and they watch how you react. There is a time to cry from the stress and your own fear, just not in front of your child who is trying so hard to be brave.

Jessica, Amelia’s mom wrote:

“Amelia gives me my strength and hope every day. People keep saying to me ‘you’re a strong woman, Jessica, Amelia gets her strength from you.’ But they are wrong; I get my strength from her. She is always smiling. My boys and Amelia dad, and my parents give me strength. They are my rocks. Each and every one of them help me in one way or the other. Your immediate family is the most important during this time. You will lose some friends, but you will make lifetime ones.”

“Then of course last but not far from least Albany Med Melodies Center team of doctor and nurses, Courtney and Angie and D7 floor from the nurses, PA’s, front desk people, cleaning ladies, everybody and anybody that has worked in some way on D7. All of them are always there for us and give all of us support and hope. They become your family. They will always be in my heart and a part of my life.”

Adriana Smiling Through

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Adriana was in the middle of her senior year at Colonie Central High School when she was diagnosed with Acute Myeloid leukemia on February 5, 2016. She needed a bone marrow transplant, but her immediate family was not a match. She ended up with a 9/10 match from Germany. Adriana had to endure three rounds of chemotherapy. The first one was very hard on her and she had many setbacks, but she endured.

On June 12, one week prior to making the trip for her transplant, Adriana graduated from high school with her whole family watching. On June 22, she was admitted into Strong Memorial Hospital where she would endure what doctors warned would be the most aggressive chemotherapy that would knock her on her butt. Her strength and positive personality helped her through this round.

June 28 was transplant day. Adriana knew she would be all right as it was also her grandmother’s birthday. Her grandmother is a breast cancer survivor, so there are some strong women in this family. Adriana did so well, she was released a week earlier than most patients. Today Adriana is healthy and not having any issues.

Adriana’s mom believes that her strength and determination helped her through. She never showed a moment of sadness. In addition, her sense of humor not only helped Adriana deal with her illness, but it helped everyone else.

This quote from Adriana during her transplant shows her positive attitude:

“So I think it’s finally time to post this and yes with a filter, but I’m still bald and I’m proud. Leukemia is really no joke, yeah at times it’s scary, but I deal with that through humor and who I am as a person. I may say it hasn’t hit me that I have cancer yet, but secretly it has. You don’t know what’s gunna happen, sometimes it’s tough with all these little and even bigger problems but sometimes it does get easy…Now sitting here in Rochester anticipating this bone marrow that will be placed in me on the 28th is kind of nerve racking, because I just want it done and over with. With that also comes it’s own problems, but I’m now strong enough to face them and I’m not a bit scared.

Adriana uses humor and expression to help her deal with her diagnosis. She said that she is strong enough to get through this. Digging deep and knowing what coping mechanisms work for her is important. She knows that by getting through the toughest chemo, she can get through anything. It changes you inside and out.

I’m impressed and inspired by her frankness and her strength. And with that beautiful smile, you know she laughs a lot, which is the best healer!

 

Together with Teagan

teaganfinalI first met Teagan and her family when I ran in her family’s fundraiser, which was a run up in Saratoga. It started a relationship that has lasted numerous years. When her parents, Juergen and Holly, decided not to do the run anymore, they jumped on board with Nick’s Fight to be Healed Foundation to help organize Nick’s Run to be Healed. Juergen’s company, Hound Dog Graphics, has been a continued sponsor. After the 7th year of Nick’s Run that was on September 25, 2016, they have become an integral part of this event.

What I love the most about families with cancer and especially families who create fundraisers or foundations is that ego doesn’t exist. Yes, we want our child’s name to be included in a name of the event or the foundation, or noted in the room we raised money to build, but that is so our child’s name is kept in the forefront. It keeps their spirit strong in our mind and close to our hearts.

But when it comes to helping a child in need or supporting another fundraiser or foundation, we come together as a single unit and do what needs to be done. It gives me hope that different people from any walk of life can still come together for a common cause for the good of all.

Teagan has not only had to deal with cancer, but also with developmental and medical concerns. Yet she is like any other 11 year old. She wants to enjoy everything she can and be with her family. She has had so many obstacles, but she doesn’t complain. She accepts who she is, what she has to deal with, and she lives her life from that point, from what is. How freeing is that? She doesn’t have to waste energy on what she wants to be. We can learn so much from our kids and connect with our own inner child if we would just listen to them!

Teagan is her family’s hero. I know she inspires her brothers, as I see how wonderful they are to her. Together with Teagan, her family has been through so much. For 9 years, Teagan has been cancer free. It hasn’t been an easy road, but her family has been right there beside her.

Go Get ‘Em, Rachael!

 

Rachael is a powerhouse of energy and one of the biggest supporters of her young adult cancer community. From the start of her diagnosis, even before Dr. Kanwar explained anything to her parents, Rachael wanted to be included. She needed to know everything about her disease, and she didn’t want it sugar coated. She was 16 years old and was ready to fight. Rachael was more concerned with comforting her parents and insisted on being the one to tell her little brother and all her friends. She took on that responsibility and always thinks of others before herself.

This take charge attitude has served Rachael very well. In addition to it helping her heal and be three years in remission, Rachael took on the responsibility of raising money and awareness for children and young adults battling cancer. Since Rachael was diagnosed, she has started a fundraiser called Trending 4 Fashion. Not only does this event currently raise money for The Melodies Center, but it also gives children an opportunity to dress up and walk the runway. They are often paired with the staff at the clinic, which builds and even deeper connection and allows everyone to let loose a bit.

Rachael knows what she wants in life, she knows that cancer has changed her path in life. Here are her words:

Most importantly, I want people to know that everyone’s fight is different. Even though two people may be diagnosed with the exact same diagnosis does not mean that those two people will handle it the same way.

Personally for me, I never wanted to be looked at like a victim. I never wanted people to feel bad for me and feel bad for what I was going through. Obviously being diagnosed with cancer was one of the hardest things I’ve ever been through, but what I continuously told myself was “it is what it is.” I found that there was no point in harping on the fact that it happened, because at the end of the day it did, and the only other thing left to do was fight. I tried to focus all of my energy and thoughts on that fight by taking one step at a time, getting through those eight hours of chemo and not thinking about the next day until it came.

And while I say all of this and truly mean it, that does not mean that I never had “bad days.” I’m still human, and I was still dealing with something that literally changed my life forever. But with that being said I would never take back what happened to me. Being diagnosed helped me learn who I truly am and who I want to be. It taught me lessons at such a young age of what is truly important in life. It brought me to Ithaca College where I’ve made the best of friends, it’s brought me many opportunities that I am forever thankful for and has brought me to meet and get to know so many other survivors that are truly inspiring.

 

While I have now been cancer free for almost four years, the support from my friends, family and community both while I was in treatment and even now, four years later, is truly what has given me strength and hope. I would not have been able to make it through without those people who never let me down and never let me forget to fight.

Thank you, Rachael, for taking a devastating diagnosis and paying it forward to those that helped you. Not only do you help the clinic, but you empower others going through this battle to never give up. You are truly a role model and an inspiration to so many.

 

 

Amazing Abby

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Abby is amazing in many ways. She is full of vitality, spunk, sass, and love. I had met Abby after she “married” nurse Matt and the wedding video went viral. Her mom, Renee, wanted to have a wedding/dance reception so Abby and Matt could have their “first dance.” The idea spread into a celebration of all our children who are battling and their families.

I have to say that Abby & Matt’s First Dance Celebration is one of my favorite events. I think because that is what it was–an event. We didn’t worry about raising money, we created a safe and festive space for our children to have fun and express their joy of life. It was so successful that it will happen again this year! Mark your calendar for November 5 for “Dance to be Healed!”

This is what Abby does every day. She has so much energy! Every time I see her either at her Lemonade Stand to raise money for childhood cancer research, or at the very successful carnival, or our pig roast, she immediately tags me, says, “You’re it,” and runs! Of course I have to chase her! Abby exudes a warmth and energy that draws people to her, as she freely gives her love.

Abby’s friend, Regan, who was featured this month, was diagnosed with the same exact type of cancer as Abby. It’s disturbing. But Abby takes her supporting role very seriously and looks after Regan. At our summer pig roast, Abby twirled Chase around in a circle, and they laughed uproariously. Abby radiates joy, and I love to be around her.

Living Life Large. That is what our kids with cancer do when they can, because they know first hand that they can be trapped in a bed or the hospital at any time. So they live their life in the present. So much we can learn from our cancer kids. Live life now. Here. Take in the moment wherever you are reading this and absorb the message.

I agree with Abby’s mom, Renee, when she says that, “Watching a child battle cancer is an inspiring and difficult thing. They will encourage you to want to change the world, starting with better treatment and more research.” Abby and all the other children battling encourage us to make a difference and be better people for them.

Abby’s family takes her treatment day by day and are so excited that she will be done this October! They appreciate all the support they have received and give back by being involved in so many fundraising events.

Keep Sparkling, Abby!

 

Justin’s Big Heart

justinfinalJustin was diagnosed on February 10, 2014. He was in the hospital from April-June 2014 because of HLH (Hemophagocytic Histiocytosis) which is a life-threatening illness that affects the immune system. From March 8-August 19, 2016, Justin was hospitalized because of a spider bite that became septic. He was in the PICU for 2 weeks, was on life support and dialysis, and his mom was told he only had 24 hours.

Amazingly Justin pulled through, but had to learn to walk again. What impresses me about Justin is his peace of mind. I know that Justin has a strong faith, and he loves to read the Bible. But he takes his faith deeper than reading the Bible. Justine lives his faith and knows that even though he has cancer, God has a plan for him. I believe that his attitude helps him through the hardest parts of his treatment and illness and gives him unheard of strength.

Despite being faced with death, Justin is more concerned with others and worries about them. This characteristic reminds me of Nick. He always made sure people were comfortable around him and told jokes to make others laugh. Such compassion is what our world needs.

I spoke with Justin the last time Nick’s Fight made a donation to The Melodies Center. He came in to listen to us speak and had such a pleasant and serene smile on his face. Erin Doescher, another artist and member of Nick’s Round Table, and I spoke with Justin. He showed us his drawings and is very talented. He has gone through so much, but I always see the drawings he posts on Facebook for other people. He thinks of others first. Not only does his drawings brighten others days,  his creativity helps him cope, which is a healing outlet.

Justin has one more year of treatment. He has recently been in the hospital with a fever, which is terribly difficult when he’d prefer to be in school and hanging with his friends. But he smiles through and knows that this will only make him stronger and prepare him for what lies ahead. Justin wants to help other children by being a nurse practitioner. His compassion and generous spirit will be a huge benefit to children who are hurting. I’m proud to know Justin and am honored that so many young adults share their stories with me. Sharing your words empowers and heals. Keep spreading joy, Justin!