Author: Sheila Quirke

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Michelle Zenie

On May 15, 2001, our family welcomed our second child, Aidan. For one week, we had a perfect little family of mom, dad, baby, and big brother, Cole. When Aidan was a week old, Cole (age 3) came down with viral symptoms – fever, fatigue, vomiting, lack of appetite. After three days of this, we took him along to the pediatrician for Aidan’s 10-day checkup.

The pediatrician was very concerned about how pale Cole was, some bruising we hadn’t noticed, and about the size of his liver and spleen. He did blood work right there in the office and sent it off. He never mentioned leukemia until he called later that evening (you know it’s not good when the pediatrician calls at 8pm!) and told us to head immediately to Yale Children’s Hospital (about an hour from our home in Connecticut). We went thinking we would be there overnight and ended up coming home over a week later.

Cole was diagnosed with standard risk, pre B-cell Acute Lymphocytic Leukemia (the “good” kind of childhood cancer). He endured 2 1/2 years of chemotherapy, including insertion and removal of his port, many spinal taps and bone marrow aspirations, daily oral chemotherapy, routine and emergency hospitalizations. He raged on steroids, ate 10 pounds of mashed potatoes at a sitting, battled chicken pox because of an unvaccinated classmate, stopped walking for a period of time due to muscle atrophy and balance problems, and missed a chunk of childhood. Thankfully, he is now a physically healthy 16 year-old. However, he deals with anxiety and some processing issues that are most likely the result of his leukemia experience.

Despite these challenges, we are the lucky ones. But we remember those days as if they were yesterday and we know not everyone who battles this monster is so lucky.

Which brings us to my story…the story of a mom who would always consider herself a “cancer mom” despite the battle being “over.” After an eight-year, much-needed “break” from pediatric cancer (mostly because I was dealing with my mom’s, then brother’s, then mother-in-law’s cancers), I started volunteering with our local pediatric cancer support organization, The Pediatric Cancer Foundation of the Lehigh Valley.

It was a great feeling to be able to do something positive for families going through the same experience I had gone through, especially since I knew how much that type of support would have meant to me at the time. In January 2014, I got the amazing blessing and opportunity to join PCFLV as Executive Director. Every day, I get to make a difference in the lives of local children with cancer and their families, as well as survivors and bereaved families. It is sometimes heartbreaking, but always heartwarming.

Pediatric cancer is real.  It is not rare. It is in my community and in yours. Probably more than you realize. It does not always look like a bald-headed, sick child. It might even be the kid running alongside your own on the soccer field. And you might even be standing next to a cancer mom in line at the grocery store. And even those “normal” looking children and families are fighting battles you can’t imagine. So reach out, be aware, and find out what you can do to help today!

Michelle Zenie is Executive Director of The Pediatric Cancer Foundation of the Lehigh Valley in Pennsylvania.  PCFLV is running their own series of childhood cancer stories from their local area called 30 Days, 30 Stories.  Read them HERE.  Or visit their Facebook community HERE.  

Don’t miss a single installment of the 2014 September Series! Subscribe!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  Today’s guest blogger has used pseudonyms for both she and her son.

By Leah Richards

When my son Matt was just twenty months old and learning to walk, he fell hard and ripped his brow open on the corner of a table in our family room. As I was coming down the stairs I heard my husband scream and then there was that pause, the silence every parent fears right before their child gasps and pulls enough air into their tiny lungs to let out a wail. “What happened,” I asked my husband, “weren’t you watching him?” “Of course.” he replied, “he just tripped over his own feet and fell.”

We drove to the local ER while I applied a bloody washcloth to staunch the blood that would not stop flowing. The ER doctor refused to stitch up my son as he said the skin had torn open like a ripe cantaloupe and the scar would be disfiguring without the help of a professional. We drove twenty miles to a different hospital and waited two hours soaked and sticky, covered in our baby’s blood for a plastic surgeon to repair my son’s brow.

For weeks I could not let go of the idea that my son’s face would never be the same again. That in a brief moment when I was not there to catch him and break his fall he had become damaged and the the scar was a constant reminder of my inability as a parent to protect him from what life was just waiting to dole out. Today you can’t even see the scar. The plastic surgeon did some excellent work.

There were other accidents as Matt grew and the nicks and grooves of a life well lived worked themselves into his skin and left their marks. A fall he took running on a pool deck left his tongue split down the middle like a snake’s, so deep and jagged that the ER doctors were forced to suture it back together with stitches that eventually dissolved on their own. There was a tumble from his bike when he was six after I had warned him again and again to slow down, that he was a new rider and that he was being a daredevil. He took six stitches in his chin and once again I was left unsettled and fearful, an ugly feeling deep in my gut that somehow I was failing at this parenting gig.

Each time Matt was hurt it was a shock to my system. However, with time, each wound healed and the scars became nothing more than a story I could tell at Thanksgiving dinner or share with friends over lunch. The scars provided closure, a literal sealing of a story that was terrifying in the moment, but could be laughed about as the years went on.  My son’s scars meant that scary things happen to kids sometimes, but in the end everything turns out just fine.

The cancer first appeared in Matt’s neck. He was just 13 in 2009 when he was diagnosed. The mass was huge like a golf ball shaped bump that sat atop his collarbone pushing up and out from the ribbed neck of his Beatles t-shirt. In order to determine what kind of cancer it was the doctor told me they had to do a biopsy and excise a piece of the cancerous lymph nodes from his neck. I remember begging the surgeon to try and keep the cut small, as I knew a scar across the side of his neck would be a constant reminder of the cancer. He promised to try his best but when he sought me out after the surgery he avoided my eyes. The nodes were so large and so difficult to retrieve that my son now had a 4-inch scar across his neck. It was so deep and so wide that they had to insert a drain tube that twisted down and filled a plastic bulb with pink fluid that a nurse would empty and measure.

They cut into his tender skin again just a few days later to insert the port-a-cath that would be used to send the chemotherapy into his blood stream to try and cure the lymphoma that had invaded his body. They used it to draw blood and check his counts and to add pints of blood when his hemoglobin levels dropped so low his lips turned white and his skin grew cold. Now there was a lump in his neck with a long line of black stitches threading through his fair skin and a small mound protruding from his chest where the port pushed out like a thick coat button. I was filled with chronic fear and desperation as the illness marked my child’s body with deep, red surgical slashes.

The scars were just the beginning and soon the time came for radiation treatments, which would give my son the best chance of survival. The techs dipped needles into thick blue ink and dotted a constellation of tattoos across his neck and torso so they would know exactly where to send the beams of cancer killing heat. The marks are permanent and trace the path of destruction the cancer took inside Matt’s body through places I had never heard of before, mediastinum, axillary, supraclavicular. I know their names now as well as I know my own.

This is what we are left with four years after my son survived the treatment that would ultimately cure his cancer and save his life.

He is tall and strong, intelligent and wise, serious, and at the same time hysterically funny. His scars have healed beautifully and the tattoos have faded and become covered somewhat by the light dusting of hair on his chest. These marks should be the end of the story as scars are in a sense closures.

A wound is opened and then it is sealed shut and in time you can attempt to forget that it is there. But the scars of pediatric cancer tell a different story. These scars offer the tale of a family broken, their innocence and thinly veiled belief that life will treat them with some kindness is shattered and their life narrative is forever altered.

Cancer laughs at the belief that a parent has control over what will happen to her child and the scars, instead of providing a happy ending, constantly highlight the uncertainty of life and asks, “what if?” It is in this very uncertainty that we, the parents of kids with cancer, pick up the pieces of the shattered narrative, try to shake off the dust, and do our best to write new life stories.

Don’t miss a single installment of the 2014 September Series! Subscribe!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Ellen Eggenberger

There was one point in “our” (I say that selfishly) journey that Samantha was grateful for her illness. She got presents, got to meet some famous people, and met some amazing brain tumor families at a place called Camp Sunshine in Maine. We shaved with the 46 Mommas and were on the SU2C show in 2010.

Finally, we were with people who understood. She had kids she could talk to. They invented texting! She talked to her friends whenever she wanted. We went into debt, over and over again, to visit these friends. I did anything I could to make her feel better. Camp saved us.

School was a struggle. I always pushed her to go. Looking back on it, that was my wanting her to be “normal.”  There was always a lot of pressure from school as well. We got reported to the truant officer at one point. She loved going to school and pushed herself as well, but she just couldn’t do it. When she entered high school, we ended up moving to a district that could work with us. In what would have been her senior year, she took her GED and did amazingly well.

She is my hero.

Her typical day is spent on a computer. She can’t concentrate enough to read books anymore. She was an amazing writer. Her cognitive skills have deteriorated to the point that she can’t write. This has devastated her. Her love of life is gone. She has good moments, but they are farther and farther apart.

I can’t describe how difficult it is to watch your child disappear in front of you, while she is sitting next to you. Years ago, during a particularly bad period of shunt revisions, she said to me, “Mom you be optimistic, I’ll be realistic.”

Samantha, I love you so much.

I will be optimistic that someday something will help you.  I will be optimistic that you can get your life back.  I will be optimistic that we can figure out how a brain tumor that exploded in your brain eleven years ago and could do so much damage is still something that can be fixed.

Someday our realistic and optimistic will be the same. I just know it.