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Raising Awareness in September

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this is what childhood cancer looks like September is Childhood Cancer Awareness month. Social media feeds will be flooded with facts and figures about why it’s so important to raise awareness, help families, and fund research for kids with cancer. We need to raise awareness about how many children are impacted by this disease, what the survival rates look like, and how treatment impacts children in the short and long term. But my post today is intended to raise awareness for what this disease does to families. How it impacts the children and parents who are beside these young patients every step of the way. I spend so much time researching childhood cancer, and in doing so I come across a lot of families. Far too many. Below I've paraphrased a small collection of situations we find ourselves in, and thoughts that haunt us as cancer parents. No one wants to imagine him or herself in our shoes, obviously. But please, take the time to read these sentiments. Allow yourself to feel the

We did good, right?

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Sonny and Ty in 2011 This summer, after Lou’s mother suffered a serious heart attack, my father-in-law was able to embrace her after she was extubated and lucid again. “We did good, right?” I heard her say through her loving tears, foreheads pressed together. “Yeah. We did good. The kids are good. We did good.” At the end of this crazy, beautiful, life, a mother just wants to know that she did good. A father wants to know that his kids are okay. Facing their own inevitable sunset, it’s all they cared to validate. That they were good parents. The kids are alright. The last conversation I had with my father-in-law, Sonny, was about Ty. We were in the hospital visiting mom, and he was so upset watching her sleep in the hospital bed, knowing how uncomfortable she was. I hadn’t seen him cry like that since we lost Ty. It makes sense, of course, as we sat there reflecting on all that Ty went through, and what mom was going through in that moment. Sonny said that he couldn’t stop thinking abo

Why I Go Gold in September

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Ty was just the sweetest little boy. He was my whole entire world from the second he was born. He didn’t start talking until he was 18 months old, but then he found his words quickly and had so much to say. He loved buttered rolls and blue lollipops. He braved the high slide at Magnolia Park all by himself, curls bouncing as I’d watch him climb the high ladder with a pit in my stomach. He loved to race me home on the boardwalk -- his three steps to my one. He held his baby brother and my heart grew even more. He chased down ocean waves. He flew kites. He gave great hugs around the neck. He went tubing behind the speedboat on Schroon Lake days before his diagnosis. My dad drove the boat just as he used to drive me on that same lake when I was a kid. Ty was almost three years old and life was great.  Swimming in the lake I loved my life then, I just didn’t know how much because I took it for granted. All of it. I hated that I worked so much instead of being grateful for how that work ena

He's right there. On our bench. Waiting for me to notice.

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  God, was it a beautiful day on Sunday. After snow on Halloween, I wasn’t expecting it. After the stress of the election and the weekend that followed, I simply wasn’t expecting a day like this and it really made my heart heal. I made a point to get outside alone to smell the leaves and remember the days in November 2012 when I used to sit outside with Ty’s fleece blanket around me, numb, watching the leaves fall all around. And yes, looking for signs from my love. I broke my foot recently. It was just a clumsy maneuver, not a big deal (or so I thought). But I have to stay put for the most part and that’s hard for me. Sunday, Lou took the kids hiking and I stayed behind and to be honest - it was lovely. Hearing the birds outside and listening to the rustling leaves I had to get out there. All the cushions were already packed away for the winter in our yard, so I hobbled my way over to our date bench across the street from our house. Years ago I used to sit there with Ty. I used to tel

It Should Have Been Me

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On August 11, 2010, it should have been me.  It should have been my headache, my MRI, my cancer. I was almost 35-years-old and, up until that point, I had lived life to the fullest. I was as carefree as I was careless. Money burned a hole in my pocket, I traveled often, I loved concerts, I beached it in the summer and snowboarded in the winter, I ate whatever I wanted, I smoked cigarettes (and weed), and aside from pregnancy, I probably hadn't gone one weekend without drinking since I turned 21.  I loved life and I enjoyed the shit out of it.   Well, there's some honesty I haven't yet shared on this blog! Sorry to those I offend, but this was never a place where I downplay the truth. I was married to my best friend, I was a new mom to two healthy boys, and I had seen very little loss in my life thus far. My heart was the fullest it will ever be because no matter how much new love may enter my life, the part of my heart that left with Ty can never be replenished.  Once a gap

Cancer is a War

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On this day eight years ago, Ty told me he wanted to play in the sprinklers.  He hadn't stood on his feet independently in two years, and he was losing his motor skills at an increasing rate with each passing day.  I wrote: "I swear, sometimes I think he forgets his limitations and what he has been robbed of.  It is a child’s right to run through sprinklers in the summertime.  To sit in circle time at Kindergarten.  To hit a baseball.  To have a best friend.  A girlfriend or boyfriend!  To go to college.  To get married.  To have kids of their own. We need to do everything we can to help save these little cancer warriors and to protect them from a lifetime of chronic illnesses or handicaps." On September 17, I would sit in the backseat of our car with him sleeping in my lap as we pulled away from the hospital, knowing it was for the very last time.   I still can't believe it sometimes. This wasn't supposed to happen to him. He was just too sweet to suffer like t

A Different Story to Tell

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I couldn’t sleep last night. I miss this face. With so much on my mind, I’m not sure I slept at all.  Years ago, I would have gotten out of bed and started writing a blog to clear my head. I could settle my anxiety by expelling all of those thoughts from the day onto virtual paper, so to speak.  But back then, I had a story to tell.  I shared messages of faith and hope as I navigated a life-changing journey that altered my soul.  Last night, as I debated getting out of bed, I was weighed down by the reminder that I don’t have a story to tell anymore.  The best five years of my life are forever behind me. But after two cups of coffee this morning, I settled on the notion that I still have so much to share - it’s all just very different. August 11 will mark TEN YEARS since my husband and I took him to the hospital for the very first time, never imagining the news that would confront us.  Brain tumor. Surgery. Chemotherapy. Radiation. The words were garbled - spilling ou

I miss him... BIG MUCH

It's been so long since I've written a blog.  Ty's Foundation recently pledged a three-year gift to support the Gift From a Child initiative.  We are so proud to be part of this incredible program that is changing the landscape of pediatric brain tumor research.  I pasted the introduction to my latest blog here, and hope you will read more. I took my toddler to the emergency department after a sleepless night, insisting that perhaps he was suffering headaches. Wearing a bright yellow t-shirt that matched his curly blonde hair, cargo shorts and flip flops, Ty jumped and giggled his way into the sunny room at the local children’s hospital. I was met with looks of surprise and confusion by the staff, but my husband and I could see his tired eyes behind that smile and insisted on an MRI. Just shy of three-years old, I winced when the needle pierced the skin on his arm. I was nauseated as I held him limp from the anesthesia, certain that would be the worst of it. How very

A MESSAGE THAT BEARS REPEATING

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September is Childhood Cancer Awareness Month. In the hopes that new readers might come across this post (please share), it is important to start off by stating the fact that my son, Ty Campbell, died in October 2012.   He had just turned five years old.   We will never really know if it was the cancer itself or the treatment that ultimately took his life, but we do know this: he died because there were not enough safe and effective treatment options available to him, which is the same reason why any child loses his or her life to cancer.   After trauma, CANCER is the number one cause of death in children.   Not enough is being done to advance cures. This photo was taken two weeks before his tumor was discovered (he was two years/ten months old).   Over the course of 26 months in treatment, Ty had more than 20 surgical procedures.   Any parent who has ever had the difficult experience of leaving a child in the hands of a surgical team – whether for something as ha