Go Gold in September for Childhood Cancer Awareness Month

If you aren’t aware, September is childhood cancer awareness month. A month easily forgotten by those unaffected. 

4 Year Old Kennedy

Did you know that 15,780 kids in the U.S  are diagnosed with cancer each year? Could you imagine? In an instant, your life is changed forever. Whether you are the patient or simply just connected with them, you will never be the same again. Life all of a sudden becomes a gift. You quickly realize how privileged you were or are depending on the situation. Time becomes precious. Your scared. You want to cry. Dealing with this is the last thing you want to do. Why you? Why your family? You’re so ready to break down and scream, but you need to be strong. The only thing you can do is keep your head up and pretend like you know that everything is going to turn out fine. 

Over 15,000 families go through that each year. 20% of those families have to deal with the worst situation possible, losing a child. You may not realize the significance of this disease. The impact it makes on millions of peoples lives. Cancer doesn’t only happen to adults; children experience it too. 

Special Spaces Room Makeover

So, what can we do about it? Well, childhood cancer is the number now cause of children’s death by disease in the U.S, yet its distastefully underfunded. Of the 4.9 billion dollars supplied to The National Cancer Institute each year, only 195 million is granted to the children’s fund. That’s only 4% of the whole budget. Insane right? There are hundreds of amazing foundations working alongside these children bringing them joy and helping them fight their battle.  

Here are a few that impacted my life:

 

·      Bear Necessities Pediatric Cancer Foundation (Grants kids customizable $500 “bear hugs” or wishes while fighting for a cure and also supports childhood cancer research)

·      Make aWish Illinois (Gives kids the opportunityto experience their dream wish while continuing to fight for a cure)

·      Special Spaces (Gives children a customized free room makeover)

 

Make-A-Wish Trip

Bear Necessities Wish

This September I encourage you to “go gold” and help one of these or other fantastic foundations that support childhood cancer. 

Here are the links to donate:

Bear Necessities

Make a Wish

Special Spaces

Thank you for supporting this cause.

Love, 

Kennedy

6 Years Cancer Free - Kennedy's Perspective

Another year has gone by and we are another year away from childhood cancer – woo hoo!  So much has happened in the last 365 days it’s hard to keep it brief.   

The pandemic has impacted everyone and most people think that Kennedy is more at risk than the rest but she’s not. She is a normal kid with a normal immune system (knock on wood).

 

K is more involved with giving back than ever before and sharing her story. She wears her scar like a badge of honor yet still flinches if anyone tries to come near it, we’re working on that.  Her hands also sometimes shake uncontrollably – a small price to pay for health.

 

To commemorate her 5-year anniversary of kicking cancer’s a$$, last September her dance teachers choreographed her 2020 solo around her experience.  They find her spirit and attitude towards life to be inspirational and wanted her to share it.Unfortunately, due to the pandemic she was only able to perform it one time before lockdown.  The dance made us both a bit uneasy and she almost backed out.  Her biggest fear was sharing her story and having people look at her/treat her different.  She also didn’t want to win her dance competition because she was a survivor, she wanted to win because she was good – and boy was she; taking 3^rd place for title.  

 

We've never shared the full version of this music/dance before because we honestly felt uncomfortable - we didn’t want the pity or the eye rolls.  I mean, come on - she’s been out of treatment forever but in the end, it’s so beautifully done and inspirational we both needed to share.  Her story is so amazing and she tells it beautifully.  She narrates the beginning in her sweet little voice and it's coordinated with those amazing tapping feet of hers (grab some tissues and watch/listen). Here is the link: https://youtu.be/dfwph_BVils

 

Kennedy also got involved with Special Spaces this year, raising money and nominating another Palatine child for a room – you can read more about it HERE -the article gives Kennedy a shout out.  She baked more than $400 in goodies and sold the contraband in school before lockdown.  Unfortunately, she was unable to raise the entire $6K she needed but a local company (Assurance) stepped in to assist.

 

Lastly – Kennedy wanted to take over this blog so this will likely be my last post but not the end of her story.  Now that she’s a teenager (13!!!), she owns what is shared from today forward.

 

So with that, I’m logging off and handing over the baton – it’s been quite the ride and I’m ending this story with….and she lived happily ever after!

 

With love,

Edan Gelt and Gene Khalimsky (Princess K’s parents)

A NOTE FROM OUR NEW AUTHOR – KENNEDY:

 

Kennedy - Special Spaces Gala Spring 2020

Hi there! After years of this blog, I finally decided to write a message of my own. I'm not quite sure how to start this off, but i'll do my best. Everyday of my life has been a new adventure. Some may not have been the most enjoyable but I'm glad for all the life lessons that went along with it. Of course, as any normal human would, I tend to forget how lucky I am to be here today. Although I may look, act, and feel as any ordinary kid, I know that deep down, I'm not. The morals of life I've encountered at such a young age gives me the strength and wisdom to realize the true importances of life. I'm not going to go pout over not being able to get the new iphone like perhaps another girl my age would. That's just not something I see worth being upset over. I will always view life from a different perspective, not just because of my experiences, but also because of the people who taught me best, my amazing parents. I could notbe more appreciative for the people who surround me today and for the beautiful life I get to live. Another year, another triumph! I'm ending my part of the blog with… life is unpredictable, forget your worries and live life like there's no tomorrow.

 

 

 

 

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