Category: Childhood Cancer Stories 2014

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 Pauline Grady

I’ve been thinking a lot lately.  I’ve come to a point in this journey that I am feeling a little lost.  It’s a common issue.  Sam is almost done with treatment, but where does this leave me?  Where does this leave a woman, a mother who worked full time prior to her son getting sick?

I started thinking about the different emotions I have felt since the beginning.  How lost I was, how much I felt that I had found a side of myself that I never knew existed and how I am now feeling lost again.  Lost, found, lost.  It is amplified when I meet the newer moms.  A common phrase I hear when I meet the new moms is “I don’t know how I am going to do this.”  Usually I only have a few minutes to talk to the new moms so my answer is usually “you get through it because you have to get through it, and you will.”  I’ve been told that numerous times when I was sure I couldn’t “get through it” and I’m sure I will continue to hear those words.

As we get closer to Sam’s last chemo visit, Sam’s last chemo pills, Sam’s last steroid pulse, I think about what I would say if I had the time to sit down and talk for a few hours with the newer moms.

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Dear New Cancer Mom,

I’m sorry.  I am sorry that you are part of this group.  I am sorry you now have the title of cancer mom.  Your life has changed.  In one split second your world just fell apart.  Allow yourself to cry, it will make you feel better.  Allow yourself to kick and scream and have a tantrum, let it take all your energy, because there are somedays that crying is all you can do for the day.  The fog will lift, I promise.  The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing, it will go away.  In place of that, you will look at people that are constantly unhappy with their lives and remind them of how precious life is.

Stay positive, things do get better, but be a realist too.  Don’t allow people to make you think that your anxiety and worry is not justified.  It is.  Your child was diagnosed with cancer.  It’s a very scary world to be placed in.  Watching your child go through this and watching other children, it’s not something you wish upon anyone….but when you witness your own child and all the other children continually fighting, well….it will change your life.

Document your journey.  Whether it be a journal, a blog, pictures, videos.  Document it.  People may ask “why would you want to document this part of your life.”  It’s a reminder my friends, a reminder of the battle.  Write your child a letter at different times of their treatment so they see the battle in your eyes, as a mom.

There are people that will support you the entire time, and others that just can’t keep up, that are tired of altering their life to accomodate you.  Those are the ones who don’t understantd.  There is no need for you to explain, so don’t.  You have a sick child, there is no explanation needed.  Move forward and don’t hate them for it.  It’s just a reminder of how difficult this life is and that some people chose to step back when things get to rough.

If you have a spouse, spend time with them alone as much as possible, go out on dates when you are able to and take a nap when the opportunity is there.  Don’t complain to much about the little things, it’s not worth it.  Pay it forward,  there are many, many people that will help you.  Some people that you don’t even know.

Swallow your pride and ask for help when needed.  Surround yourself with people that understand and know what you are going through.  No matter how much others claim to know what you are going through, they don’t.  Perhaps they sympathize with us, but they can never empathize.

If the opportunity arises, take sometime for yourself.  Even if it’s a ride in the car by yourself, do it.  Don’t feel guilty.  You are giving 110% of yourself to help save your child.  The worrying, anxiety and lack of sleep is overwhelmingly exhausting.  If there is anything that has caught me off guard this entire 3 years is the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.

Regardless of the type of cancer, the battle is long and difficult.  Regardless of what others say, this will be a part of your life forever.  Once a Cancer Mom, always a Cancer Mom.  Hang in there.  Keep moving forward.  Head up, chin up.  #onward

Sincerely,

A Cancer Mom

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This post originally appeared in Pauline’s blog about her son’s cancer treatment, chemoanddonuts.  Pauline’s son, Sam, finished his leukemia chemo protocol yesterday (!), but she will always and forever remain a Cancer Mom.  

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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 Mindi Finch

Earworms. Those bits of music and lyrics that worm their way into your ear, then tunnel through your brain on an endless loop. For the next several moments, you can’t get it out of your head. You will eagerly seek out something to break the cycle. But what if these mind numbing tunes, normally like nails on a chalkboard, became a salve to your soul? An earworm can become a mantra, a touchstone, a glimmer of hope and an affirmation.

2009 was to be my year of change. Obama was sworn into office and change was sweeping the hearts of our nation. I had taken the first fragile steps on my way to significant “ch-ch-changes.” Little did I know what The Universe had up her sleeve for me. I am mom to three offspring.  All my life my only solid goal was to be a mom. My last child arrived June 2005. Upon exiting the womb and finding himself in my arms, the newest of my brood gazed up at me with an expression one might find on an aged Buddhist monk. His body oozed serenity while his eyes sparkled with wisdom. This tiny spirit came to be known as Gregory.

Being the youngest of three, Gregory was exposed to and came down with all kinds of respiratory illnesses, common head colds. Considering how much he was exposed to with two older siblings, I never gave much thought to the frequency or severity of these illnesses. With each illness, fierce fevers would be followed by a week or so of coughing, a runny nose and sneezing. At 20 months old, we did have an unusual five day stay in the hospital when Gregory acquired Rotavirus, a gastrointestinal illness that results in severe dehydration. A few days of gut rest with IV fluids allowed his body to correct itself. So far, so good. When you are a parent, you expect to have at least one hospital admit with your kids, and I finally had mine with my third born. But then life quickly returned to the crazy, joyous and raucous chaos that we have always embraced.

Enter February 2009. A time that is frozen in my core. Gregory, once again, had a head cold. This time it lingered longer than I was comfortable with, and it was joined by two symptoms that struck terror in my heart from his time spent inpatient with Rotavirus: dehydration and lethargy. After a trip to his pediatrician, an afternoon in the ER and 48 hours in the hospital, I heard the words no parent ever thinks he/she will hear: “Your child has cancer.” My world was shattered with that brief four word sentence. My wise, light-filled and charming little three-year-old had cancer and would be enduring a treatment that kills 50% of the people who receive it. Gregory needed a bone marrow transplant. His only hope at survival and he needed it STAT. From this point forward we, started “livin’ on a prayer”.

As we endured this process, I wrote, Facebook’d, networked and found the childhood cancer community. Underpinning all this work, grief, fear, anxiety and tiny brilliantly-lit moments of joy, my spirit was echoed through music and lyrics. A sweep of my fingers across the keyboard allowed me to convey how things were in that moment, to family, friends and my expanding childhood cancer community at large. Without revealing the exact thoughts in my brain, I could express, work through, and cope with the raging emotions in my heart through a few lines of lyrics.

Gregory’s treatment progressed and we found ourselves in Seattle, Washington, at Seattle Children’s Hospital, beginning the arduous odyssey in an attempt to save his life. The idea of hope has always been a struggle for me. Without consciously acknowledging the idea of hope, my brain tentatively searched for a whisper of a future that included my youngest child. Gregory’s treatment would take him to the brink of death. His body would be pummeled with high-dose chemotherapy over a six day time frame in order to destroy every remaining cell of his existing bone marrow. His leukemia is genetically hard-wired into the DNA of his marrow. Complete annihilation was the goal. Only an infusion of donor bone marrow stem cells offered a glimmer of hope that would allow his body and spirit to stay with us for longer than his disease had proclaimed. These dire circumstances forced me to find hope through hoping for hope.

Family and friends, who understandably had no concept of what we were actually enduring, kept insisting that Gregory was going to be all right. It was the only way many could cope with the fears I was facing: by offering a societal platitude that did nothing to assuage my fear and anxiety, yet gave them a tool to confront our reality while protecting their own hearts. This sentiment wormed its way through my heart, traveled to my brain and sought out a connection that would link my emotions and my thoughts in a way that would give me permission to hope. Eventually, this connection revealed itself as an earworm. Every time someone would utter this idea, my head would default to Bob Marley’s lyrics in “Three Little Birds”: “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.

These hopeful and free words echoed through my brain during every chemo infusion. Through every acceleration in his body temperature. Through every moment when Gregory’s gut rebelled and tried to heave up the non-existent contents of his belly. Through every time I glanced at his shockingly beautiful bald head. Through every spasm of pain that erased the glimmer from his eyes. Through the days, weeks and months that his body rebelled against the brutality of our attempt to save his life.

“Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right.”

Bob Marley’s earworm is a very welcome mantra that sits alongside those bone chilling words: “Your child has cancer.” Through these last four years, music and lyrics have continuously and faithfully been my boon companion. I find  my life filled with solace, joy, remembrance and grief. Through events that bring thoughts, which trigger emotions, earworms have cradled my spirit. Allowing me to cope with the trajectory of my path that The Universe has placed me on.

Ironically, every little thing is all right. They are exactly what they are meant to be. For the time being, my “Three Little Birds” sleep soundly each night, after I’ve embraced each one goodnight. They are still with me, safe in our nest. Gregory has survived his diagnosis, yet with any traumatic event, I often find  myself slipping into fear and anxiety. With much more frequency than I would like to admit. During those times, I plunge into my catalog of earworms and remind myself: “Don’t worry ‘bout a thing / every little thing gonna be all right.”

Grateful thanks to Mindi for sharing her story of finding hope.  Mindi herself has a blog, MindiTheMagnificent, and every September publishes a post called, “What YOU Can Do to Support Childhood Cancer!”  Please read her words and share in your circles.  

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It’s not even twelve hours into September, Childhood Cancer Awareness Month, and I am sitting at my keyboard quietly crying.  To quote a fellow Cancer Mom, “September is different for me than for you.”  A-freaking-men, truer words have never been spoken.  (Thank you for those words, Tara.)

For me,  September is a bit like looking down the open mouth of a lion.  It can be overwhelming and sad, uplifting and hopeful, or both of those things within moments.  Using my platform to raise awareness about childhood cancer is not without a price to me, or my family.  By soliciting the stories of children with cancer, I purposefully keep myself rooted in the childhood cancer community, despite our daughter Donna being gone just shy of five years now.

Some days I just want to ignore cancer.  I want to move on, leave it behind (as if we ever could), celebrate all that I have rather than dwell on what I have lost.  This year in particular had me experiencing some September inertia.  For months I have put off doing the work I need to do to curate the stories of childhood cancer I seek out.  A wall of shame grew around my inertia, getting higher with each passing day.

I think the inertia comes from a place of knowing.  I know intimately the struggles these children and their families experience.  Reading about it is painful and draws me back to a time that my own daughter suffered from her cancer.  It reminds me of what could have been, what will never be.  It reminds me of my own trauma experienced in not being able to save or protect my daughter.  What greater function of parenthood is there than to protect your child?

In the end I could not protect Donna.  But I can honor her.  I can work to shed light on the thousands of children like Donna, living and dying with cancer.  I can remember my strong, brave little girl who, despite tremendous hardship, always did as she was asked.  I can find the inspiration I need, as I always do, in beautiful, sweet, funny, wise Donna.

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Three years ago I published Donna’s Cancer Story, daily installments of Donna’s 31 month cancer treatment that covered a month in Cancerville condensed into 1000-1200 words daily and a few photos to go along with it.  When I pitched the idea to my blog manager at ChicagoNow, I completely underestimated what I was undertaking.  I lived it, how much harder could it be to write about it?

Pffft.

Like Donna’s cancer, Donna’s Cancer Story changed my life in powerful ways.  The act of writing it turned me both into a writer and a childhood cancer advocate.  I remain committed to the belief that our children’s stories matter.  I remain committed to the belief that childhood cancer devastates the families it touches in profound ways, known and unknown.  I remain committed to the belief that if people know a child with cancer, they cannot help but become involved to varying degrees, from posting information in their social media feeds, to donating $ for research, to becoming strong and vocal advocates.

I’ve seen it happen and believe in the possibility that educating folks outside the childhood cancer community is a crucial advocacy tool.

That is why I created the “September Series” last year.  Each day of the month I shared the Mary Tyler Mom platform to help tell the story of childhood cancer, one child, one parent, one oncologist at a time.  This year, I will do the same, thanks to the brave contributors that help me. Readers will be introduced to childhood cancer survivors, grieving parents, oncology nurses, children currently in treatment, hoping parents, praying parents, worried parents, grateful parents, moms whose children are perfectly healthy, but heeded the call put out last year to become a part of the pediatric cancer world.

I encourage you to read and share.  That’s how this whole thing works, you see.  The childhood cancer community needs you.  Desperately.

Please consider reading, sharing, and educating yourselves about what life is like for a child with cancer and the families who love them.  Grateful thanks from my wounded heart that remains strong in the hope that our collective efforts will improve the lives and outcomes for children with cancer and their mothers, fathers, brothers, sisters, grandparents, cousins, aunts, uncles, friends, classmates, teachers, and neighbors.

Let’s do this.  September is Childhood Cancer Awareness Month. The color is gold.

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I still have a few slots available this month to share the story of a child with cancer.  If you want to be part of this year’s September Series and have a story to share, please email me at marytylermom@gmail.com for consideration.  

Please consider subscribing to my blog so as not to miss a single installment of the 2014 September Series.

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