Wednesday, September 5, 2012

Go Gold:Three Sisters


Campbell is six and has been fighting brain cancer for over half of her life. She has two amazing sisters-Caitlin and Caroline. While Campbell fights and struggles, her sisters fight and struggle too. 
Campbell has been battling Anaplastic Ependymoma, a rare form of Brain/Spine Cancer, since August 2009. She has undergone four brain surgeries, bacterial meningitis (as a result of one of her treatments for brain cancer) for 8 months, one brain tumor, five spinal tumors, one spinal surgery, a total of 86 rounds of proton beam radiation therapy, countless days, weeks and even months away from home while in treatment.
Childhood cancer is a family disease. Please read the story of three amazing and heroic sisters. Team Campbell will walk in the 2012 North Jersey CureSearch Walk; all proceeds will benefit childhood cancer research. Donate to Team Campbell today and help support lifesaving research. 
Here is the story of Caitlin, Caroline and Campbell, as written by her mother Robin. 
Picture this:  a sunny September morning.  You are wearing your new school clothes, which really are fall clothes and much too warm for early September, but you just HAD to wear this new outfit to school today.  You are anxiously waiting for your ride to school.  You got your own breakfast, because Mom is not there.  You made your own lunch, because Mom is not there.  You packed your backpack, double-checking, because Mom is not there.  Your ride pulls into the driveway, you turn instinctively for that reassuring “School will be good today.” hug and smile from Mom, when you remember, once again, Mom is not there.
Mom is with your little sister who has been battling Anaplastic Ependymoma, brain cancer, for over three years now.  Your sister is missing her first day of school for the fourth time.  She is only six.  She has NEVER been to school on the “first day of school,” all because of Brain Cancer.
This is just one small snippet of the life of a Childhood Cancer sibling, the behind the scenes Super Heroes.  Everyone knows Campbell is a hero, but not many realize how heroic her sisters are.  Of course, Campbell is my hero.  But, I think just maybe even more so, my heroes are Caitlin and Caroline, Campbell’s amazing sisters.  
Caitlin and Caroline grapple with their own fears, anxieties and guilt daily.  They fight with Campbell, just like “normal” siblings do.  The catch is, her sisters then feel guilty because they are fighting with their sister who is sick, yet doesn’t really look too sick.  They deal with the jealousy that goes along with watching Campbell get attention from everyone, literally everyone.  Then they deal with the guilt.  They think, “How can I be jealous?  She has Caaaancer!”  They get angry and jealous (there’s that word again) because instead of being there for their milestones, like the first day of school, Mom is with Campbell, AGAIN.
In the past three years, I have missed four first days of school for my two older daughters, (including one first day of middle school and one first day of high school), a ride in an ambulance as my oldest daughter was transported to the ER with a broken collarbone.  She had been staying with friends while her father and I sat with Campbell in the PICU as she recovered from brain surgery. (This was a PICU first – one parent having to leave to go downstairs to the ER to meet an incoming ambulance with another of their children.  Great.  It wasn’t enough being the first Ependymoma they had seen.  We get to be first again!)  Can you imagine how frightened you would be as a sixth grader riding in an ambulance without either your mom or dad?  And yet, my Caitlin has done this, and so much more.
The list of missed milestones continues… three dance recitals, one Nutcracker audition for each sister, dance team auditions twice, first Broadway audition, help with studying for seventh and eighth grade final exams, an elementary school graduation, one birthday for each sister, and one eighth grade Cotillion. This doesn’t include the countless sleep overs that needed to be cancelled because Campbell’s counts were low or the birthday parties that never happened because Mom was in Boston while Cam received radiation for six weeks (three different times).  This may not sound like much, but believe me, to my daughters it is everything.  And yet, they NEVER complain.  I mean NEVER.  They are the most understanding 14 and 11 year old I know.  They GET it.  They get it more than many adults get it.  They feel more depth of emotion than I thought was possible for a child.  This is not by choice, of course.  No one approached them one day and told them they would give them the depth and wisdom of an adult who has lived a long, full life.  This life was thrust upon them, as it was every other EpendyFamily.  No one thinks it will be them.  Yet, every day it happens to 46 families.
They feel the “scanxiety” as much as we do.  Scanxiety, for those fortunate enough not to be too familiar with the Childhood Cancer world, is simply Scan-Anxiety.  This encompasses the weeks, sometimes months preceding an MRI.  As the dreaded Scan date approaches, faster and faster, the level of Scanxiety increases.  The siblings feel it too.  They worry.  Worse yet, they worry AND they have no control.  At least we as parents have SOME control, or like to think we do.  We are the ones who get to make the decisions (lucky us).  We get to make the toxic gamble on which chemotherapy agents will work best on our child’s dreadful disease.  Aren’t we lucky?  But at least we get a say.  The siblings have to hear the news after the parents, and the patient.  Sometimes they hear the news about their sister after other people have heard it!  In the past, we used Facebook as a communication tool to keep our friends and family abreast on Scan reports. We stopped that a little over a year ago.  We could not have other people know about Campbell’s scans before her sisters do.  One day it occurred to us that Campbell’s sisters deserve to know scan results, good or bad, before even extended family knows.
The siblings deal with the looks and questions from peers at school.  Children are so open and blunt.  One student actually asked my daughter last year if Campbell is going to die, right in the hallway as the bell was ringing for everyone to scatter to classes.  Really?!  I was mortified, as was my daughter.  How exactly do you respond to THAT?  This person had, in ten seconds flat, actually uttered my daughter’s worst fear out loud, and did so in a nonchalant way!  How dare she!  Needless to say, my daughter’s attention span was not the greatest for the rest of the day, possibly adding to the sliding Math grade last year.  This is yet another thing that the Sibs have to suck it up and drive through – school.  
The adults in the Childhood Cancer world have to deal as well, but we like to think that by the time we are adults we have mastered the art of denial.  We can turn off our emotions like a faucet, refocusing our attention on the must-dos, like work, until we can turn the faucet of emotions back on again later in the day.  Children shouldn’t have this skill.  Sadly, the siblings of Childhood Cancer patients do.  They have to master it, sometimes better than adults, early on.  My children can spit facts about Childhood Cancer at you as if they were multiplication facts.  They can correct someone’s ignorance and tell them that 46 FAMILIES will be told today that their sibling has cancer.  They can even tell you that 7 of them will die.  They don’t like to mention this fact out loud, perhaps fearing uttering it out loud may seal their little sister’s fate.  
They have, on their own, hosted two bake sales for Cookies for Kids’ Cancer, and three lemonade stands for Alex’s Lemonade Stand.  They have walked in the CureSearch walk to end Childhood Cancer for the last two years, raising their own money towards research funding.  They know that awareness leads to funding which will lead to a Cure for their sister, and also rightly a Cure for them.  A Cure for Campbell means, maybe, their life will not revolve 100% around Campbell and what she needs.  Perhaps they will get their Mom back.  Maybe then my heart which has been ripped into three many times in the past three years will be able to heal.  Maybe I can be there for all three of my girls every time they need me, and not via FaceTime in a Pediatric Oncology Clinic.

Go Gold and share Campbell's story. 
Tweet: Go Gold: Three Sisters journey through #childhoodcancer #CCAM @trinitasyoga @CureSearch http://2yoke.blogspot.com/2012/09/go-goldthree-sisters.html
You can follow Campbell and her sister’s journey at www.pray4cam.blogspot.com

4 comments:

  1. I type through tears...What amazing sisters! I am praying for a Cure for Campbell and for life to revolve around dancing school and not scans and treatments

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  2. We wish you and your family well...and we know what you all are enduring...we are the grandparents of Ryan Kennedy
    Prayers go out to you and the girls

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  3. Amazing story of strength against adversity. Hugs for the whole family.

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  4. Praying for Campbell and your family EVERY night!

    Susan Michelle & Brigit

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