Celebrating 5 Years - Last Chemo Treatment

Five years ago this past Monday (August 12), Kennedy had her last chemo infusion.  A month later she had her port out and then we celebrated like crazy with a huge bash and magnificent trip to Disney, thanks to Make-A-Wish.

I forgot Monday was “that” day.  I must have programmed it in my calendar to repeat annually and although I glanced and make note of it every year, I never thought much of it. 

This year, I mentioned it to Kennedy.  She asked if we were going to celebrate.  I thought about it and figured, Hell YEAH!  There is SO much to celebrate.   In fact, we don’t celebrate enough.

Kennedy is alive, our family is well – we are enjoying one another so much and I’m soaking up every second.  Yes, we should celebrate.  We need to take pause and be grateful for Kennedy, for the end of chemo, for life in general, for our family unit.  We don’t celebrate enough.

Five years later after her last treatment Kennedy started 7th grade, she auditioned and was selected for 7 company dances - dancing 14 hours a week, she takes piano, she's super social and she's one of the kindest souls I know.  

Kennedy’s illness taught us a lot about living and our perception of control – more or less, control is an illusion.  You can have everything one day and have nothing the next.  No matter how hard you plan, follow every parenting book, listen to every advisor, exercise, eat right – it can all vanish in an instant.   

Our family has been hit hard by cancer – Gene and I lost our mother’s to it and we saw it tear apart our 4 year-old daughter and steal a big portion of her early years.  We saw a neighborhood dad lose his life to it and leave behind young beautiful children with only months to prepare.  We lost an aunt to it.  It has knocked on our door too often.  And it doesn’t necessarily have to be cancer – it could be any illness or life-altering event.

So I’m ending this blog with some advice to everyone I know and love.  Live.  Enjoy every second.  Celebrate the wins – big or small.  Tell your loved ones how much you love them.  Appreciate everything you have, always.  Look around and be grateful.  It all can vanish in an instant.  Life is a gift – cherish it.  Cheers to another milestone!

Edan and Gene

Happy 12th Birthday Princess Kennedy

Kennedy is 12!

What an amazing day. The thought of saying “Kennedy is 12” eight years ago was unimaginable.  We didn’t now if she would make it through the year, let alone to her 12^th birthday.  Yet here she is – a happy, vibrant, funny, beautiful and kind little girl dancing through life.

A lot has happened since my last post in December.  Kennedy had her braces off, performed her first solo at a a competition, took up piano, earned straight A’s and she even has her first friend that’s a boy (oh boy!).

It’s been almost 5 years since she finished her last chemo treatment and outside of a funky little scar on her chest, you would never know the battles she’s faced.  

Kennedy takes on life with gusto.  She rarely falls pray to drama and thinks with a bird’s eye view rarely seen in children (or adults for that matter).  Her life lesson at such a young age has given her perspective that I admire and strive to achieve.

I (we) are so proud of the young woman she is becoming. We learn a little more from our little hero everyday.

Happy birthday princess K!   We love you so much.

Edan & Gene

I attached Kennedy's tap solo - her tap teacher couldn't have choreographed to a better song as this kid has a lot to be a happy about.  We all do.

Clinic Update - 4 Years Out of Treatment

Kennedy and Dr. Sarvida

September is childhood cancer awareness month.  My community is adorned with Gold ribbons, a nagging reminder that some are still facing the nightmare we went through. 

We often forget what Kennedy (we all) experienced during those 2.5 years.  To me, she is my shining, beautiful and goofy 11-year-old princess.  Normal. As if cancer never invaded our lives.

But cancer did knock on our door and we will never be the same.  Every fever, growing pain, headache and bruise is a concern.  Kennedy marked 4 years out of treatment this September.  Now it is Kennedy that asks, “what if the cancer comes back?”  We tell her it won’t.  Life has no guarantees but I know “it won’t” is the right answer.  Maybe she sees our reaction every time she doesn’t feel well.  Was it that trip to the ER for a migraine that got her concerned?  As parents, we strive to do better.

We are frequently asked by friends and family how Kennedy is doing.  We answer, “fine, she’s dancing, doing great in school – she’s a typical tween”. It’s true, she’s doing great but not unscathed.

The chemo did create some nuances in Kennedy’s development.  Her executive function, working memory and processing speed is developing slower than expected.  Although she scores straight A’s, she has to work harder and longer than her peers.  Her hands and feet also shake and she is prone to frequent migraines.

Kennedy’s chemotherapy protocol was heavy in Methotrexate, which included IV flushes, spinal infusions and oral medication.  Methotrexate in children is known to cause neurocognitive delays and Vincristine is known to cause neuropathy.  

We went for our annual visit today, thus this entry.  We recently switched hospitals to Hope Children’s Hospital in Oak Lawn because they have an incredible survivorship program and magnificent doctors (Ricarchito Manera and Ellen Sarvita). We met with a nutritionist, educational specialist and survivorship nurse – it was a long day for us with a lot to learn.  Kennedy was also seen by one of her favorite doctors – Dr. Sarvida; her smiling face and loving demeanor made the hour ride worth it.  

Overall, everything is good.  Kennedy will continue to be monitored each year and I will do my best to keep everyone posted as she continues to thrive.

One final note – this year’s Santa Hustle 5K and Kids Run at Soldier Field on December 2 will benefit Bear Necessities Pediatric Cancer Foundation.  Come run with us and save $7 off admission with code: KENNEDY.  Participants get a hoodie, hat, beard and finisher medal.  Register at www.santahustle.com

Until I blog again – cheers!

With love,

Edan

Reach For The Cure

A few months ago, Kennedy’s school offered the opportunity to put together a project representing a common theme “Within Reach”.  Kennedy wrote a very short synopsis of her experience with childhood cancer titled, “Reach for the Cure”.  Out of 300 entries the PTA Reflections Northwest Council received, Kennedy’s literature piece was selected to represent the Northwest Suburban Council (CCSD15) at the next round of judging.

Her submission went up against dance choreography, film production, literature, music composition, photography and visual arts.   There were beautiful entries and she is shocked that she made it to the next level.  Possibly it was the subject of her submission that influenced the judges, not many kids experience a life altering event so young.

Kennedy loves to read and write.  She journals a few days a week and is currently working on a graphic novel which reflects pieces of her life and those around her.  What I personally love most about her Reflections submission is her innocence in addressing a serious subject.

Kennedy’s Reflections essay is below.   Wish her luck in making it to the next round!

Reach for the Cure

By:  Kennedy Khalimsky

Do you know what’s in reach?  The cure for cancer.  It’s just right there!

You know, I met a girl who had cancer, her name was Kennedy Khalimsky.  Oh yeah, that’s me.  Today, I’m telling you my story.

It all started on New Years Eve in Mexico in 2011 and I was feeling queasy.  I had stomach pains, then later I puked.  I felt so sick that I didn’t even make it to midnight.  I was 4 years old.  The next day I spent eating pretzels by the pool. 

Fast forward and we are home.  My dad pulled up with the car and we went straight to the doctor.  Nothing’s wrong with me.  A few weeks later, my mom takes me again and for the second time, there’s nothing wrong with me.  My doctor prescribed me soup and liquids for the next week.

My parents took me for the last time and my dad demanded that they took blood.  They did and that’s when they knew I had leukemia, a type of blood cancer.  They found out the cancer was low risk after the first month of treatment but still, it was the beginning to a long journey, a two and a half year journey of chemo. 

After that, I was in and out of the hospital, one time I was there for a whole month.  I also had every day chemo treatments.  I hated the shots and when they had to access my port, it was the worst.  I even wore a “no pokey” shirt.

Every night, I had to starve two hours before and one hour after my chemo pill and my mom and I would practice visualizing killing cancer cells. I was princess K and I was a white warrior killing the evil cells inside.  I’m not sure if it was the pills or my nightly mind attacks but it worked.  I reached for a cure and I found it with the help of my doctors and family.

If my body could reach a cure for cancer, I know I can achieve anything I reach for.

Artist statement:  My story relates to the theme because the cure for my cancer was in reach, just not there yet.  My cancer was low risk but still very dangerous.  The story explains how it all happened and the things I did to get through it all.












Edan Gelt

Clinic Visit - 3 Years Out of Treatment

We visited Loyola on September 20th for Kennedy’s quarterly visit.  Being three years out of treatment, her scheduled appointments will now move from quarterly to every 4 months.   Another mark of progress, each year, another month added between follow-up visits.

Dr. Suh was happy to see Kennedy and she loved to see him.   Thankfully, all is good and she’s growing (fast).  Her favorite nurse Christa wasn’t there to take blood and I thought she would panic but she played it cool.   She loves to watch the needle go in; I would be totally sick but she gives it no mind at all.

Kennedy has definitely blossomed this summer; she has grown several inches and is looking more and more like a teenager than a little girl.  This is bittersweet.  I’m so happy to enjoy her growing up but I want just a little longer with her sweet little girl persona (versus her new, hormonal Sybil temperament).  Although only 10, she has turned into a pre-teen, full of attitude and uncontrollable emotion with a figure to match.

While at clinic, there was a little boy screaming bloody murder in an adjacent room. Hearing him made my heart break.  I didn’t know if they were accessing his port, if he was newly diagnosed or if he was just deathly afraid, but it brought back a flood of memories.  The screaming reminded me of Kennedy’s diagnosis day and them trying to get an IV in.  We had to hold her down while she screamed, and in the end they failed after several attempts. All the memories I buried deep inside came rushing to the top.  I hate cancer, I hate clinic and I hate that Kennedy had to suffer. Returning to this place every few months makes me face what I try to forget every day.  With that said, I love that she is healthy, I love her doctors that got her healthy and I’m happy she is a vibrant, kind and hormonal pre-teen.

The CureSearch walk was this weekend.  Our team raised over $8,000 in benefit of CureSearch and I am thrilled. Our fundraising seems to decrease year after year as we move further away from the diagnosis.  Although I wish I could do more, there are so many families afflicted with other diseases, natural disasters and important causes to support. I am grateful that in aggregate the Chicago walk brought in over $120K to fund Childhood Cancer Research.

The walk was both an uplifting and heart wrenching experience.  The children in-treatment and those that are cancer survivors were honored and adorned with a ribbon, Super Heroes (both children and characters) were all around and face painting and kids activities kept everyone in good spirits.  Kennedy’s best friends came to support her, as did our own friends and family.

For the families of those children no longer with us, the mood was somber.  Each child that lost his/her battle was remembered by family who walked on to the stadium field holding an 8x10 photograph. Doves released at the end of the ceremony had us all sobbing. I don’t want to imagine what these parents experience every day.  I give them all credit for showing up year after year, trying to raise funds for other families that still have hope.

Childhood Cancer Awareness month is almost over but everyday more than 43 children are diagnosed with cancer.  Just because September is coming to a close, it doesn’t mean the foundations that support childhood cancer research stop needing funding.  If you haven’t already done so, please consider donating to CureSearch at http://www.curesearchevents.org/site/TR/CureSearchSuperheroesUnite/CureSearchSuperheroesUnite?team_id=2752&pg=team&fr_id=1461

 

Edan Gelt

Kennedy Update and CureSearch

It’s been 6 months since Kennedy has been officially “cured” from cancer, 3 years since her last round of chemo and 5 ½  years since she was diagnosed.  Those are big numbers.  With each day, we step further and further from what could have been to what is, and we are eternally grateful.

We still visit Loyola four times per year for clinic checks but as we move away from our experience with childhood cancer, we can’t forget there are kids less fortunate than Kennedy that are currently losing their battle or just couldn’t win and are no longer with us.

For the past several years, we have fundraised for CureSearch (the organization that backed Kennedy’s chemo protocol) and volunteered on the pediatric floor of Loyola.  This year I was named publicity chair of the CureSearch Chicago Walk and hoping to achieve coverage of the event and cause while also raising the money needed to help the organization do what they do best.  The article https://curesearch.org/Chicago-Mom-of-Young-Cancer-Survivor-Joins-CureSearch-Event-as-Publicity-Chair announcing the appointment ran in the Daily Herald and Chicago Tribune.  As a result, Kennedy received a note from a Palatine State Representative.

 

I love CureSearch because the protocol they backed saved her from potential heart damage and delivered less-severe side effects.  Most people don’t understand that even though treatment is over and Kennedy is “cured”, the chemotherapy can still wreak havoc and cause long-term organ and cognitive damage into adulthood.  It’s hard to escape the effects of chemicals being pumped into one’s body during key developmental periods.

Kennedy has personally raised $85 for this year’s walk by making and selling slime with her friends.  In May, Kennedy and her friend Angela went door to door and sold slime for $.50 - $3 a jar.  We were astonished by her idea and accomplishment.  While many of her friends were selling slime for personal gain, Kennedy was raising money for a cause that is embedded in her soul.  As a 10-year old, she has more empathy and understanding than most adults I know.

So with that end – this is where I ask you to walk with us on September 24 or just donate to a wonderful cause.   Our goal is $7,500 and we are almost there!  The link to our CureSearch fundraising website is: http://www.curesearchevents.org/site/TR/CureSearchSuperheroesUnite/CureSearchSuperheroesUnite?team_id=2752&pg=team&fr_id=1461

 

Thank you all who donated already, this cause means the world to our entire family!

With Love,

Edan Gelt & Gene Khalimsky

Happy 10th Birthday Princess Kennedy!

Happy 10^th birthday to our beautiful Kennedy!

Dear Kennedy,

Outside of every day, there are three specific times of year we stop and take pause to reflect and appreciate how lucky we are to have you in our lives; the anniversary from your leukemia diagnosis date, the date you finished your last chemo treatment, and your birthday.  These are the days that we look at you a bit differently; hug you more often and hold you a little tighter.  This isn’t to say we don’t appreciate you all other days of the year but most days we forget everything you (and we all) endured.

At 10 years old, you’re more mature than your peers – both mentally and physically.  I contribute genetics to your physical development but without a doubt, your early life experience makes you more perceptive to the social world around you.  You identify pre-teen drama and steer clear; you already know that life is too short to waste your time on gossip and petty behavior.  It took me years to learn some of the lessons you understand at 10 years old.

You are a hard worker.  School doesn’t come very easy for you; often you spend hours reading and re-reading, writing and re-writing but you never give up – you are determined to get it done and come home boasting straight A’s.  Same with dance, you often struggle but work extra hard – practicing with every free moment, not wanting to disappoint your teammates. 

Kennedy, you are our miracle.  We are so proud of who you are and can’t wait to meet the woman you will become.  You and Maddox are the joy and loves of our lives. 

Happy birthday princess KK!

Love,

Mom and Dad

Letter written on May 3, 2017 by Edan Gelt and Gene Khalimsky.