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

family photo 2008

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.

The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

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Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

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Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.

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

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.

To All the Warriors

Today is 9 years since Nick was diagnosed with cancer. 9 years since his own independence was taken away and then his precious life. 

Contrasts have been a major theme for me this week and it’s been tough. I think about all the children and young adults who are battling cancer right now. Some have just found out that their lives have changed, some are healed, some have relapsed one, two, three times, some are away getting transplants, and some are saying goodbye to their families. 

For each and every one of them, cancer has taken away their freedom to live a happy and fulfilling life. It has yanked them off their path and thrown them into a war. It has irrevocably changed their lives and their families. 

It breaks my heart and is difficult to live with. 

But then I see the joy that our kids find through the tragedy, the loss, and the restrictions. They understand what they can no longer do. But instead of letting it defeat them; instead of allowing cancer to take away their independence, they fight and treasure what they are able to do. 

I have often been impressed by their tenacity, altruism, and determination. I have cried from their loss, but refuse to let it break me, because they don’t give up. 

Today I remember my boy, Luke, Justin, Reese, and all the other children and teens who never gave up, but fell in battle. I honor those who are fighting so hard like Zach, Markel, and everyone else in the throes of their battle. 


Today we remember our freedom, and I thank everyone who keeps us safe. My heart and love goes out to those who fight a different battle every day of their lives. 

Miss you, Nick ❤️

Happy 5th Birthday, Chase!

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Chasing away Leukemia. That is what Chase has been doing since he was a one month old baby. His mom had brought Chase in for his shots and the doctor didn’t think Chase looked right. They did an ultrasound and his liver and spleen were 3x their size.

It took 15 times to draw blood because his blood was a big clot. Finally, his parents found out that he was 98% filled with cancer blasts and his white cell count was 1.8 million. The doctors had never seen that high of a number in an adult! The doctors didn’t feel that Chase was going to live. An emergency christening was performed and that night his mom held her baby tight. She woke up to him screaming and that was when she knew they were in for a fight.

Chase’s family went from Syracuse to Albany to be close to The Melodies Center that would treat him. They stayed at the Ronald McDonald House in Albany, which has been like a second home to them through the years.

Chase has endured mouth sores, fevers, infections, and illnesses. He had chronic C-diff. He couldn’t tell his parents what was wrong. He just cried and cried. They had to permanently move to Albany. Two years later Chase ended his treatment. The family could finally get a chance to lead a normal or at least simpler life. 6 months later as his mom tried to go back to work, Chase went to the doctor for anemia, which in itself wouldn’t be big deal. For a child who has had cancer, turned out it was. Chase’s cancer was back.

This time he had to have a bone marrow transplant. Chase knew what was going on and in his mind his parents were putting him through this. He didn’t understand why. The hardest part about being a parent to a child with cancer is knowing that they will have pain and further sickness to heal. You have to sit back and watch. It’s only natural for a child to take it out on their parents because of unconditional love, but that doesn’t make it any easier to take.

This family has been separated, transplanted from place to place, Chase has suffered so much dealing with horrific side effects such as Graft vs. Host disease. Everyone suffers with him, because it’s so much to bear and witness. I can’t imagine the emotional rollercoaster that the whole family has gone through over and over again.

I have seen cancer tear families apart. It has broken marriages. It has ended lives. But Chase’s family stands strong amidst the rubble and battle. No it has not been easy, but they have done everything needed to be done in order to do the best for their little boy. That may not have been what has been best for everyone else, but they did it because that is what family does for each other, no matter what.

The community’s emotional support has also been outstandingly positive. Everyone who  helps this family, shows up big time. It doesn’t matter what it is. The need to ease this family’s pain and show Chase and his siblings that the world can be a great place is strong.

Chase proves this every day. Today is his birthday. He has shown that with persistence, prayer, lots of love, and amazing medicine, he is a miracle. He is a beautiful and courageous boy who is here to make an even bigger impact on this world than he already has. Happy Birthday, Chase! May you have tons upon tons of more happy days!

There’s Nothing Like Girl Time!

There’s nothing like having a couple girls come to where you live with bags of goodies and lots of hugs.

There’s nothing like four other girls arriving with balloons and laughter and even more hugs!

This was the scene at the Ronald McDonald House (RMHC) in Albany on Sunday. Naya was diagnosed with T-cell lymphoblastic leukemia in December 2013 and is still in treatment. Recently Tim Stowell of the Green Drakkoman Foundation posted on Facebook that Naya and her family were being evicted because their landlord refused to fix and address some code violations that negatively affected Naya’s health. They were homeless and Naya was in the hospital.

Doing what they do best, Debbie Ross and the RMHC of the Capital Region welcomed Naya, her 5-year-old sister and parents into their home. The stress that was reduced because of this was priceless. Imagine having a child with cancer and no home to go to.

Katie Collins, the co-president of Nick’s Round Table, saw Naya’s post and immediately went into action. She wanted to do a fundraiser for her and brought it up at their monthly meeting. Leaves of Life were added to a tree that Erin Doescher drew with incredible skill for a $1 donation. The group raised $153.00. By the way underneath those leaves are the most intricately drawn branches and a heart.

Maya’s Tree of Life–Front Row L-R: Mackenzie & Naya; Back Row L-R: Katie Collins, Lauren Sawicki, Liz Sibson, Maddy Healy, Kendra Sisco, Becca Abel

Next, Katie reached out to Tina, Naya’s mom, to arrange meeting the family and spend time with Naya and her sister, Mackenzie. She reached out to the board and including myself, 7 of us went to share some girl time.

Naya opened the door before we could even ring the bell. She anxiously waited to meet Katie Collins and Lauren Sawicki who were just as excited to meet her. They came bearing gifts like a huge donut pillow and a purple hat and scarf that Naya didn’t take off and best friends necklaces for Naya and her sister.

Then Kendra Sisco entered with brightly colored balloons, followed by Maddy Healy, Becca Abel, and Liz Sibson. The girls were ecstatic! With enough energy to light all of Albany, the girls headed outside, which gave their mom a little breathing room and time to decompress.

Naya holding one of her balloons and vibrantly wearing her new hat and scarf!

What struck me the most about Tina was her positive attitude and deep gratefulness. She told me that Nick’s Family Hope Bag was the first connection to anyone when Naya was diagnosed. She read the brochure about Nick, who had the same exact diagnosis as Naya. Instead of feeling dread, she felt like she was being taken care of and comforted. She knew they would be all right.

Lauren and Naya

Katie with Mackenzie and Naya out by the playground

Liz and Naya goofing around in the playroom!

So many people and foundations have come stepped up to help this family stay together. The love that filled the room yesterday can only heal. The beauty and synchronicity of reaching out and giving because you can’t imagine doing anything else is what makes this world a fantastic place to be.

Until the next girl time, Naya!

If you would like to support any of these foundations and Naya directly, please visit these websites:

Team Naya Ninja in Training You Care Fundraiser

Nick’s Fight to be Healed Foundation

Ronald McDonald House Charities of the Capital Region

Green Drakkoman Foundation