Monday, December 16, 2013

Part of the Solution

I will never solve all of the world's problems.  Yes, I understand that.  I don't like it, but I understand.  That doesn't mean that I can't be a part of the solution to a few problems.

I will fight for a cure to blood cancers until the day I die, or until that cure is found.  I will never, ever give up.  I beg, I plead, I harass.  I have lost "friends" on Facebook, who clearly weren't friends to begin with.  I.will.not.stop. This hits too close to home.  I have to find a cure for the disease that is trying to take my son. 

I am also fighting for my friend Stacy's son, Alex.  Alex has Duchenne Muscular Dystrophy (DMD).  His muscles will waste away until they rob his lungs of the ability to breathe, and his heart will no longer pump.  There is no maybe in this scenario.  At this moment, there is no treatment, no cure.  And that's just wrong.  Every child deserves the right to grow up, to find his own magic.  This terrible disease won't let Alex have that opportunity, and that pisses me the Hell off.

DMD doesn't get nearly enough funding for research, because so few children get the disease.  It, like childhood cancer, is considered "rare."  Well, it's not rare to me.  It's not rare to Stacy.  So, that leaves the funding us.  I am fired up.  I am angry as Hell, and I'm going to do something about it.

I'm going to keep on running.  I am going to keep on hosting fundraisers.  I am going to beg and plead.  I'm sure I will lose more "friends."  And I don't care, because I am a mom on a mission.

I am unstoppable.

Thursday, December 5, 2013

How to Spot a Cancer Mom

You've seen us.  You might not know it, but you have walked right past a cancer mom.  You've noticed the unkempt woman in the sweats, praying that her card will work at the pharmacy.  You've looked at her cart, filled with cheese puffs and bacon, her cancer child's steroids-induced cravings.  We're there.

You'll recognize a new cancer mom by the haunted look in her eyes.  She has been dealt a devastating blow.  Her life has been destroyed.  It will never be the way it was before.  It will never be completely okay, and she knows that.  Her child, her sweet baby is sick, and there is nothing -- NOTHING -- she can do about it.  If you look into her eyes, you will see her pain, her agony.

You won't see the gut-wrenching sobs that will erupt out of her when she's by herself.  You see, she's doing her best to hide her agony from everyone around her, especially her children.  Moms are strong, moms can handle anything.  But a cancer mom has been fractured.  One more hit could completely shatter her, but she will never show it.

A few months into treatment, the cancer mom will often be resigned to her child's diagnosis.  She is tired, and no amount of sleep will allow her to feel rested.  She is exhausted down to her soul, but she plods forward: chemo, counts checks, food, puke bowl, repeat. 

And then she becomes the seasoned cancer mom.  You will see the fire lighting her eyes.  You will see the determination in her step.  She is fighting for her child.  She will do whatever she can, read any research, spend hours online asking, probing, searching for answers.  She will lace up her running shoes to fund research.  She will write letters, she will speak up to bring awareness.  The seasoned cancer mom will reach out to hold the hands of the newest members of our club.  She is on fire, and nothing can stop her.

Sometimes the cancer proves too strong, the research comes too late.  Then, you will see a new kind of cancer mom.  Though she may try to hide it, her heart has been permanently shattered.  There is no way to recover from the loss of a child.  Her eyes and her heart are now hollow.  She will love her family with all that she has, but the pain is always there, no matter how hard she tries to hide it.

You have seen us.  We are your neighbors, we shop at the same stores.  You've seen us.  Please don't look away.

Wednesday, August 28, 2013

A Letter to Commissioner Roger Goodell



Dear Commissioner Goodell,

On November 24, 2010, I had to break the news to my sweet seven year old son, Josh, that he had leukemia.  Upon hearing the news, he sat up straight in his hospital bed and cried “I’m going to die!”  Once I reassured Josh that he would not die, he threw himself back and screamed “I can’t play football anymore!”   We were faced with a life-threatening diagnosis and a three and a half year treatment protocol, and Josh’s biggest concern was playing football.

Josh endured one year of very intense chemotherapy, which left his body fragile and exhausted. He missed playing during the 2011 football season, but he never missed an NFL game.  All day Sunday and on Monday nights, Josh was able to watch the sport that he loves, and cheer on his favorite teams, the Giants and the Dolphins.  Football provided his escape, as it does for many pediatric cancer patients.

In July 2012, even while continuing with his chemotherapy, Josh was able to return to the football field.  He earned the starting right tackle position.  In 2013, at the age of 10, Josh again earned the starting right tackle position, and is now also a defensive end.  Josh is so dedicated to his team that he left the hospital after receiving chemo and headed to the football field for practice.  As you can see from the below photo, that’s just how Josh rolls. 




September is Pediatric Cancer Awareness Month.  As the mother of a cancer warrior and football lover, I ask you to please recognize our children in September.  The NFL has brought incredible awareness to breast cancer in October.  Let’s go gold in September!  

Pediatric cancer is the leading cause of death from disease in children ages 1-14.   Every year, 10,400 children under the age of 15 are diagnosed with cancer in the US alone.  Of these children, 1,545 will die.  (Source: http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood)  Even when patients survive, they face a list of long-term side effects, which can include: secondary cancer caused by the chemotherapy, growth and development issues, emotional problems, physical disabilities.  (Source: http://www.cancer.gov/cancertopics/pdq/treatment/lateeffects/Patient/page1)   Josh is not able to run as quickly as he did before treatment, because of the side effects of vincristine, which he receives once a month.  He is very quick to anger because of the dexamethasone, which he takes for five out of every 28 days.  He is tired, he is sick, and yet, he runs onto the football field with a passion.

Please honor our children.  They are true heroes, who fight for their lives and their childhood.  A gold ribbon sticker on the back of a helmet, gold shoelaces, any type of recognition would be amazing.  With awareness comes funding.  With funding, there is research.  And with research we will achieve our goal: a cure.

Our children are in the fight of their lives.  Won’t you take up arms beside them?

Saturday, July 20, 2013

A Letter to the Editor of People Magazine

Dear Editor,

I read with great interest the article about Shannon Miller's new baby, and most importantly, her survival after her ovarian cancer diagnosis.  Although no cancer battle is easy, her statement that "Rocco grew up with me hooked up to my IV tube and port" left me dumbfounded.  Nine weeks of chemotherapy is tough, but in no way did her two year old grow up in that two month period.  If you would like to hear a story of someone growing up hooked to an IV tube and port, please allow me to tell you about my son, Josh.

On November 24, 2010, I had to tell my then-seven year old son that he had leukemia.  Immediately upon learning of his diagnosis, he sat up in bed and shrieked "I'M GOING TO DIE!" I reassured Josh that no, although he had a long battle ahead of him, he would not die.  He then threw himself back against the bed and wailed "I CAN'T PLAY FOOTBALL ANYMORE!"  To Josh, football was his life, and that joy was ripped from his hands by a cruel twist of fate, leaving him to face a three and a quarter year chemotherapy protocol.  (That's 169 weeks...160 weeks more than Shannon.)

However, because of the outstanding physicians at Joe DiMaggio Children's Hospital in Hollywood, FL, Josh did not have to sacrifice his greatest love.  In fact, his surgeon placed his port on Josh's ribcage, where it is safely protected by his shoulder pads.  Josh was told that he had to wait until the roughest 52 weeks of chemo were completed, but yes, he would play football again!

On July 9, 2012, Josh placed his cleated foot on the field that he loved.  Josh not only was able to play football again, but he earned the starting right tackle position.  Because of Josh's chemo schedule, he misses one week of football after his quarterly spinal taps with chemo flush, and there have been days that we have left the hospital after he received chemo and headed straight to practice.  When he needs anti-nausea medicine, he trots over to me on the sideline, takes his meds and sprints back to his team.

This year, his second season playing while fighting cancer, Josh has earned the position of starting left tackle.  Oh, and this year, he's also a starter on the defensive line.  He has the blind side on both sides of the ball.  During games, he will not have a break to recover from the Florida sun, and he couldn't be happier.  Josh is growing up attached to an IV tube and port, but he doesn't let it interfere with his life.

Unfortunately, I know of too many children who are growing up connected to an IV tube.  Many who have been battling for more than half of their lives.  September is Pediatric Cancer Awareness Month.  Won't you please help us to bring attention to this woefully underfunded disease?  Everyone knows the pink ribbon.  Let's bring attention to the gold!

Sincerely,
Laura Pita
Weston, FL

Monday, December 3, 2012

Advice For My Sweet Niece

Today, I read a blog post that broke my heart.  It was "advice" from a mother to her daughters, including information pertaining to how to marry a professional athlete, the size of her future engagement ring, and the fact that designer clothes don't come in plus sizes.  I am horrified.  So, I decided to write my own two cents, and since I don't have a daughter, I'm writing this to my one and only niece, Hannah.

Dear Hannah,

I am so happy and lucky to be your Auntie Awesome...I mean Aunt Laurie.  Over the past 39 years, I've learned a few things, and I would like to share my thoughts with you.

Many girls talk about marrying a professional athlete.  Forget that.  Find a sport that you love to play so that YOU can be a professional athlete. 


Go to school, cultivate your career and save your money.
 

Designer labels (or lack thereof) do not define you. Your attitude and actions define you.

Always be true to yourself.
 

Be kind to others. You never know when you will need that kindness returned. Karma!
 

Never allow another person to define your worth. You are priceless.
 

Bullying is never okay.  Ever.  Tell your teacher.  Stick up for others.  Remind a bully that people will like him more if he's nice.  (That last bit of advice from Aunt Liz has served your cousins well.)

A smile goes a long way.
 

Your mother was once your age. She might have learned a thing or two over the years. Listen to her advice, and then make your own, informed decisions.

Hannah, as much as I would like to protect you from bullies, the hurt you will feel when you like a boy who doesn't like you back, the bad decisions you will inevitably make, I know that I can't.  These experiences will strengthen you and make you a better, more compassionate person.  It might not seem like it, but you will make it through.  And I'll be with you, every step of the way.

Love,
Aunt Laurie





Monday, October 1, 2012

Fear

When I least expect it, fear will creep up behind me, slithering up my spine, sending chills through my entire body.  Sometimes I forget that my child is not healthy.  And then, creeping along, smudging my happy existence, fear will return.  I will remember.  My sweet boy has cancer.

Josh doesn't look sick.  In fact, he looks like any nine-year old football player would.  He's big.  He's strong.  He's covered in bruises.  Bruises like when he was first diagnosed.  Josh had just finished his second season playing football.  I figured those bruises came with the territory.  In fact, those bruises appeared because his platelets were dropping.  But he has bruises now.  Fear clenches my chest.  Is it back?  No, I reassure myself.  His counts were just fine.  He's being watched closely.  They're just football bruises.  But are they really?

I was organizing the bookshelf today.  I found a paper that Josh had completed with his teacher when he was four.  "When I grow up, I want to be a business man."  A smile crossed my face, as I clutched that paper to my heart, thinking of that precious four year old who wants to be just like Daddy.  And then -- what if he doesn't grow up?  There it is.  That sneaky fear, sending its cold tendrils through my brain.

I can't take it anymore.  And I sob.  I sit, and I let the fear take over.  I worry.  I rock. I cry.  And then the warmth begins to fill my heart.  The light of happiness forces the fear back into the dark recesses of my mind.  Josh is doing well.  He's happy.  He's relatively healthy.  He will beat that dreaded leukemia.

He has to.

Sunday, August 12, 2012

Pancakes, Anyone?

Afternoon naps are best taken when it's a rainy day.  Okay, so that might be true for most people, and I would really, really love to say it applies to me, but rainy days mean that Keagan is trapped inside.  While I'm asleep.  Meaning that Jorge is in charge.  Does anything good ever happen while I'm the only one asleep?  Ummmm...no.

I woke up to Josh peering over me.  "Oh, Mom!  You're awake.  Cool.  Keagie did something with some spices."  Huh?  Oh, no big deal.  He had probably made a tower with the spice jars.  He always does that when I cook, so it's probably not a big deal.  Back to snoozeland.

Fast forward a few hours.  Keagan and Matt are going insane with all of their pent up energy.  Tensions are running high, and I'm going nuts.  To distract the boys, I asked them to help me out by taking the recycling to the garage.  Keagan popped right up and shouted "recycling truck!"  I gave him a few boxes and sent him on his way.  His path was about thirty feet.  Just through two rooms.  It should have taken a minute at most.  Five minutes of silence later, I started to wonder.

"Keagan!" I called.   "Nofing!" was the reply.  Oh no!  "Nothing" definitely means that "something" is going on.  I walked into the living room.  There, I found Keagan dancing in a huge pile of "something."  There was some sort of beige powder all over the floor, and Keagan was shuffling his way off to Buffalo.  AAAAHHHHHH!!!!!!  I grabbed the boy, stuck him in the tub, washed off the mystery substance, and sent that boy straight to bed.

I grabbed the vacuum and started to clean.  It was then that I discovered the box.  Of pancake mix.  I had made pancakes this morning, and used about half of the mix.  So, only half a box of pancake mix was spread all over my living room.  Do you know how much pancake mix is in half a box?  It's a lot.  And it was all over my floor.

breathe, breathe, breathe.

Did I happen to mention that he added some water to the mix?  So, underneath all of the powder, I discovered hardened pancake batter.  Sigh.

The powder is cleaned up, and now there is a damp rag, hopefully softening the cement, I mean batter.  That boy is going to age me greatly.  But, really, should I expect anything less?