Pediatric Cancer – A Survivor’s Story

I used to be a wedding planner in my past life. Although crazy and stressful at times, the thing I loved most about my job was the close relationship I formed with my clients over the course of the year (and sometimes more!) that we worked together.

And now thanks to Facebook, I have reconnected and stayed in touch with a lot of my brides.  One such very special former bride of mine, Kristin, is now a married mom  and recently contacted me about writing to raise awareness about a very important topic: pediatric cancer.

The year we worked together we were immersed in the world of linen colors and menu choices, so I had NO idea she went through something like this as a child.

Since most all of you reading this blog right now are moms yourself, I think I am safe to say that most all of us simply cannot IMAGINE if it were our child that was affected.   Beyond even my comprehension.

Kristin wanted to share her story to shed light on pediatric cancer because it is the number one disease killer of children. More children die from cancer than AIDS, asthma, cystic fibrosis and diabetes COMBINED.   Did you have ANY idea?

But there is something you can do to help! Keep reading…but first, here is…

Kristin’s Story

“Do you remember much before the age of five? They say your earliest childhood memories aren’t formed before three but even then the memories tend to be traumatic, i.e. being lost in a store, breaking a limb, hospitalizations, etc. My earliest memories start at three when I was diagnosed with cancer.  I remember quite a bit about my journey.

Neuroblastoma is a cancer of the sympathetic nervous system and is the most common cancer among infants.  The tumor begins in the nerve tissues in the neck, chest, abdomen, pelvis, or, most commonly, in the adrenal gland.  My tumor was in my neck.

The early symptoms are the same ones found with many other childhood illnesses making diagnosis often difficult and long.  Fatigue, swollen glands, crankiness and loss of appetite are the most common early symptoms so it’s easy to see how and why these are chalked up to the common cold, growing pains, etc.  Because of this quite often by the time of diagnosis the disease has spread making it more of a challenge to fight. As with all cancer early detection is key.

Nothing is more powerful than parental intuition. It is that little voice that tells you your child is about to wake up, the spring in your step to catch your toddler right before they stumble, the nagging feeling that tells you something just isn’t right.

It started with a runny nose and crankiness so my parents took me to my pediatrician who told my mom a bad cold was going around and to give me over the counter cold medications.  When I didn’t get better and my normal friendly, happy personality changed my mom took me to her family doctor.  He was a new physician, just out of residency.  He gave me a full physical something my pediatrician did not do.  When he felt my neck he found the tumor.  I ended up seeing an ENT who did a biopsy and then several surgeries until the mass was gone.  I was fortunate and the cancer was found at Stage 2, which meant going through extensive radiation but no chemotherapy.

I remember going to CHLA weekly, staying for days at a time and sleeping in my crib that looked more like a cage. Vividly I can still smell the anesthesia and see the mask coming towards my face and feel the nurses holding me down.  Clearly I see the needle from the bone marrow biopsy and my dad holding my hands and crying while I screamed. I remember being wheeled down the hallway to the operating room and holding on to my parents not wanting to let go.  I recall being measured for the foam blocks used during radiation and the smell of the sterile room and feeling claustrophobic when the machine moved closer and closer.

Though those memories are traumatic I also have very happy memories of this time in my life. Every visit we would stop at the vending machine and get Welch’s grape juice in a glass bottle.  I thought that was pretty cool.  I loved the art therapy and would tape my masterpieces to my hospital room walls.  I made many friends during my longer stays, fellow patients, their parents, nurses and the doctors.  I remember never feeling alone and in reality never being alone.  One of my parents was always with me and in addition there were family members and friends visiting all the time.  Often they brought balloons and teddy bears, knowing just the way to a three year olds heart!  I was one of the lucky ones who got to leave CHLA a happy, healthy, cancer free toddler.

I am now a healthy 33 year old wife and mom to a wonderfully energetic toddler of my own.

I share this because of the National Cancer Institute’s $4.6 billion budget less than 3% goes to pediatric cancers; that’s for all pediatric cancers, all lumped together.  I share because 1 out of every 5 children diagnosed with cancer dies and in this day and age and in this country that is shameful and unacceptable.  I share because September was Pediatric Cancer Awareness month and you probably didn’t even know that.

I share because there is something you can do to help!

A group of pediatric cancer awareness advocates have started a Facebook campaign asking Oprah to do a show on the dreadful disease.  The page has over 40,000 followers.  Between the Facebook and Twitter campaigns there has been some media coverage and many celebrities joining our cause.  Please go to “like” the page (<–CLICK) and then suggest it to your friends. If you feel so inclined join the Twitter campaign as well.  Together our voices are louder than they are alone and as a survivor I thank you for your support. – Kristin Enrico”

Thank you Kristin for such a touching and personal post.  Such a story of courage and survival. I joined the Facebook campaign! Will you?

And while I was working on this post, I found out about a  race on May 1st, 2011, the Pediatric Cancer Research Foundation’s Cinco de Mayo Half Marathon * 10K Run * 5K Walk/Run * 1K Kid’s Fun Run.  Since I have been inspired to run another half marathon, I thought it might be fun to put together a Tiny Oranges team! But I would need 10 people!   Would anyone out there be interested in participating in any of these events? What a GREAT cause.  More to come on this one just putting some feelers out there to see if I could get runners to fundraise for this cause?  XO Jen