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.

Nick t-shirt
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.

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.

family photo 2008
Our family September 2008.

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!

Duct Tape Heals

Bri holding the duct tape wallet Alysia made for her.



I recently visited a special young lady in the hospital.  I met Bri two years ago when she was diagnosed with Acute Lymphoblastic Leukemia (ALL) at age 12.  Unfortunately, this courageous gal has relapsed and must face another cancer battle. I was really sad to hear this, since it is very close to Zach’s relapse, who I recently blogged about.

Bri filled out a Nick’s Comfort Bag survey that the foundation gives to patients ages 10+. Bri is very creative and is interested in duct tape arts and crafts.  It’s a big craze making wallets, bracelets, hair clips, and even dresses!  My niece, Alysia, has been making duct tape wallets for the past year and has become quite good at it.  I asked her if she would like to shop for Bri’s comfort bag and also select different duct tape patterns. She did and also decided to visit Bri in the hospital.

Alysia met Bri and showed her all the different styles and color wallets she has made.  She shared tips on creating them and Bri loved her pink and blue personalized wallet.  This visit had a positive impact on Bri, and meeting a new friend who shares her interests is a great distraction.  I was happy to see her, meet her sisters, and her grandmother.

Plus I think (and hope) going to the hospital was healing for Alysia, after losing her cousin to cancer.  It’s hard going back to a place with painful memories.  But Alysia thought beyond that and keeps Nick’s spirit alive by giving.

Bri, her little sister, and Alysia

Bri,keep fighting cancer and create duct tape magic! Alysia, I’m proud of you for using your gift to help others!

Spending time with someone who is sick or sad can change everyone’s life around.

Duct tape really does hold everything together!