Pediatric Cancer – A Survivor’s Story

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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

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Redefining Romance in Parenthood

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I was thinking about Father’s Day the other day and almost had to laugh out loud at how MUCH our lives have changed since we became parents 4 years ago.   I mean, what did we DO before with all our time? It also got me to thinking about how much my idea of romance has been so drastically redefined since having our  two kids.  Things sure are different now, but I couldn’t imagine it any other way.  So this is a personal post in honor of the daddy in our house this Father’s Day!

I met my husband on February 20th, 1998 at Malarkey’s Bar in Newport Beach by the jukebox.  I wasn’t supposed to go out that night.   I was nursing a broken heart and crying to the Titanic CD in my room. No joke.  But my roommates got me in a party outfit and coerced me into going out with them to get me out of the “My Heart Will Go On” loop.

When I saw him across the room, I thought he was the cutest guy I had ever seen. I still do. It really was love at first sight. A couple hours later and with a little liquid courage, I spoke to him first. From that moment on we have been together ever since.

He called me two days later (this was the age of the movie “Swingers” – tell me you remember this part!) and asked me out to dinner. I bought new make-up, a new outfit and dreamt of where we would share our romantic first date.  He picked me up (still as cute as I remembered) and when we get in the car he told me he was thinking we could get pizza.

OH NO. PIZZA?! Really?  Major romantic red flags.  Months later after we had been dating for awhile I asked him, “WHY pizza?” His response? “Everybody likes pizza.” That quote still makes me laugh.  He’s practical, that husband of mine. And, he had a point.

As we talked over pizza that night, I found out that in addition to a shared hatred of mushrooms, we had lots more in common.  He listened more than he talked, asked me questions, and really genuinely seemed to care what the answers were.  He really was the nicest guy I had ever met.

But in the beginning I found myself hung up on his so un-romantic gestures. I once received a BBQ for a birthday gift (and didn’t ask for one) and a chimnea fire pit thing for the patio (huh?!)  There were no expensive restaurants or surprises. No wining or dining.  No romantic weekend getaways.  Except for that one time to Palm Springs. With a time share catch. Ouch.

But I am a fairly low-maintenance sort of gal and I fell in love with him and all of his endless amazing qualities over many more Malarkey’s night outs and pizza dates.  We were married just about 3 1/2 years later and started our family about 4 years after that.

When we had kids I had NO idea just how much my idea of romance or romantic gestures would be so drastically redefined.

Now romance is how he lets me sleep in on the weekend while he takes the girls grocery shopping.  Or how he makes the brownies for my daughter’s preschool snack day.

When we have a barfer, he immediately does the clean up as I hold the hair and bucket.

Now it’s romantic to me how he cleans the kitchen at night after the kids go down because I have to go blog and work.

Romance was how he was my biggest supporter as I wanted to leave a “real” job  (and paycheck!) and start my businesses.  He is the first to tell me I can do something. He puts my happiness above all else.

We are a TEAM as parents and in life.   He always told me that from the beginning, we are a team, way before we were even talking about marriage or kids.  I had no idea how important our little team would turn out to be.

But most of all, how his girls, all three of us, are his most important priority. We are first.  There is never a doubt.

He is my rock.  The yin to my yang.  My best friend.  The person I would rather be with above all others.   My most favorite person in this entire world.

So, if I had to tell my 23-year-old silly, hung up on where he would take me to dinner self, a lesson, it would be that there is a WHOLE lot more to life than expensive gifts or fancy restaurants.   The real, priceless gifts lie in the every day gestures.  The type of partner on YOUR team.

As my girls grow up, I know they will look at a man, their dad, that was always there for them. That made them #1, that sacrificed everything for them, that loves them no matter what, that treats them with love and respect.  And, when THEY go to look for a man to marry, I know they will have the same expectations.

So, this blog is two-fold, number one a thanks to MY DAD and a very happy father’s day.  Because he is the man that taught me how I deserved to be  treated.

And, to the father of my children, happy father’s day (and incidentally, happy birthday!) to a man who shows me just how much he loves us, every day, …in the most UN-romantic ways!

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