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.

It's official, February 2nd marked Kennedy's cure date which means we are done with Leukemia - for good!!! 

To celebrate, we went out to dinner, Grandma, Grandpa, Uncle Sergey and Nicole celebrated with us. Kennedy picked sushi. The next day, we let Kennedy play hooky and I took her for a relaxing mani-pedi and then sprung Maddox from school early for lunch with Grandma.  Kennedy had a blast.  A big thanks to the Simonians for the beautiful fruit arrangement and Lannoye's for the flowers - Kennedy was so appreciative!

I still have my moments of wonder - for example, at Maddox's wrestling meets, Kennedy loves to play with an adorable little wrestler on our team, a 5 year old girl.  When I see them together I can't believe how young Kennedy was when she was diagnosed.  I look at Kennedy standing next to this  little 5-year old and she looks like a giant at 9 years old.  I wonder how much she missed, how much we all missed the first 2 years of treatment. What would life have been like if she never got sick?  Sad that we can't give her those years back to be a healthy and vibrant normal little kid. 

Then I manually shift my thinking to the positive -  of how much she's grown in 5 years and how lucky we got, the incredible friends we met along the journey (Kate, Donna, Megan, her incredible doctors), the invaluable lessons we learned, the appreciation for life - a better perspective.

 We were lucky.  We got to keep her.  It's a constant reminder of what really matters in life.  Observing is a unique lesson we got out of this.  People act so strange sometimes - they hold possessions near and dear, spend years seeking revenge or harboring resentment, or work at jobs they hate, spending time with people they don't like, etc.  They forget what matters most - but we never will.  That was the gift from this experience.  We appreciate and are grateful for pretty much everything these days.

So with that said, hug your loved ones tight, remember what really matters and don't take anything or anyone for granted - every moment is a blessing.

Thanks for taking this journey with us! We will be reaching out for the CureSearch Chicago 2017 Walk soon and would appreciate any support - they do a great job backing childhood cancer research and protocols.

Love,

Edan Joy Gelt, Gene Khalimsky, Maddox Khalimsky, Kennedy Khalimsky and our furry son Jaxon.

5 Years to a Cure

It's been over a year since my last post but I believe every story needs a happily-ever-after.

Kennedy is a vibrant, 9 year old girl who loves dancing, hanging out with her friends and baking.  Since my last post, Kennedy has been in remission with bi-monthly blood work and check-ups.  She doesn’t even flinch when they draw blood and stares right at the needle (just like her daddy) - this makes me feel like a big baby because I’m a chicken.

On February 2, 2017, we will get the news we’ve been waiting for since her diagnosis – Kennedy will be officially “cured”.  With ALL Leukemia, children who are free of the disease after 5 years from the date of diagnosis are considered cured. 

I've had the opportunity to spend the last two summers with the kids as a stay-at-home mom.  It wasn't something planned but I couldn't be more thankful to have had that time.  I earned the role as Kennedy’s “hero” and we all discovered I CAN COOK (pretty good too)!  I also knocked out a 100-mile century bike ride and got beat by Maddox at chess – more than once.

I volunteer at Loyola on the 4th floor – the pediatric ward where Kennedy was treated.  I thought it would be hard to return.  Surprisingly, it hasn’t been that bad with the exception of February 2016. Knowing it was 4 years later and I was in the same place was haunting but thankfully I was there for a different reason.

Gene and I don’t discuss or reflect on the 2.5 years she was in treatment. I printed out her blog in a hard covered book for her to read, she glances through it occasionally and sometimes I’ll catch Maddox reading too.  


So let the countdown begin…23 days till the cure!

A video of her hip hop dance last year: https://www.youtube.com/watch?v=qv15W2dqMgo
And her group dance: https://www.youtube.com/watch?v=jqRfDi9I-6E

 

7 Months Cancer Free!

Kennedy's first dance competition - as a "Little Monster"

Such a whirlwind!  We’ve had so much fun living a crazy life; I completely passed the 6-month mark without any update.  So I’m a month late….worse things have happened ;)

Over the past 7 months, we celebrated Kennedy being cancer free with a good old-fashioned block party.  Then we went on an incredible Make-A-Wish trip to Disney World.  Kennedy started 2^nd grade, joined a competitive dance group and is now preparing for a talent show.

Things that used to stress me out like accessing her port; fevers, nausea and missing meds are a thing of the past.  Now I am stressed if I have the right shoes or pink hair spray packed for a dance competition.  Can you believe I no longer sanitize everyone who comes near her????

It feels good to be a normal mom (is there such thing???) but I really need to up my game. I feel so lost but I’m catching on!  We still go back for blood-work and check-ups every month to make sure there are no cancer blasts but I no longer worry, I’m confident she kicked it for good.

Block Party and a "kicked cancer's butt" cake

Our fabulous Doctors – Ricarchito Manera and Ellen Sarvita moved over to Christ Hospital in Oak Lawn in December to lead pediatric oncology/hematology; leaving us lost at clinic.  We intended to follow them there right away but the thought of being in a state-of-the-art, high-traffic center that treats even more kids with cancer comes with a feeling of dread.  I don’t want to meet more families with cancer, knowing many will not make it.  My heart can’t handle losing any more. I like our small little bubble at Loyola where we are healthy and done.  On the other hand, these doctors saved her life and our hearts belong with them.  It is a very tough decision that we still need to make.

Our home at Give Kids the World

So back to the good stuff…

Our buddy Mickey Mouse with Auntie and Grandma

The Make A Wish trip was incredible.  We stayed at Give Kids the World – an amazing village all run by volunteers dedicated to children with life-threatening conditions.  There was nightly entertainment, pools, a mini-golf course, arcade and daily parties - a dream come true for kids.

Make-A-Wish also included a dolphin experience at Discovery Cove and Kennedy had a special pass that got her (all of us) to the front of the line at both Disney World and Universal Studios.  We were treated like royalty. 

When Kennedy was asked what she would do if she could ever come back, her answer was “volunteer at Give Kids the World”.  I truly expected her to say “visit one of the theme parks again" or "go on such and such ride” but I had her pegged wrong.  Our kid has heart!

Being Wizards at Hogwarts

That’s all for now.  Check back again in 6 months (or maybe a year).  Cheers!

Kennedy's Kicked Cancer's Butt - 2.5 Years of Chemo Complete

It’s been awhile since I’ve updated this blog but I felt this story deserved an end.  Today we just finished clinic, watched Kennedy get her last back pokey - a bone marrow smear to make sure no cancer cells remain.  This one was awful since she screamed out when they twisted the needle to get the marrow, thankfully she remembers none of it.  We will never forget it.

Today she also was accessed for the last time.   We videotaped it because she is proud that she no longer cries, let alone even flinches.  It’s amazing that she is so brave because a fishing-hook sized needle would scare the hell out of me.  I will try to post the video if I can.

Tomorrow, her port will be removed under general anesthesia.  This scares me more than today’s procedure since the port feeds straight to her heart and surgery in general just makes me uneasy. 

After tomorrow, we are in a new stage of cancer care.  She is still tied to clinic monthly for cancer testing, including blood work, doctor visits and random testing.  For the first year, post her last treatment we visit monthly; the second year we visit bi-monthly and the third year, quarterly.  She is not considered officially “cured” until the five-year mark from diagnosis but we are officially in a very strong state of remission – hell, I consider her cured already.

My best friend’s daughters was recently diagnosed with juvenile diabetes.  The news was devastating to me because I don’t know how you poke your child daily – it almost felt worse than leukemia to me.  Shortly after the diagnosis, she texted that she didn’t understand until that moment how hard it was to console a parent with a sick child.  I never thought of it that way and I guess I really didn’t realize that people don’t even have a glimpse of what the parents go through until they themselves go through it.

When I saw them after the diagnosis, they seemed normal, happy – they adjusted to their new life.  What I saw in the parents (that they likely didn’t realize) was fear.  They were all smiles and they were doing what needed to be done with big smiles on their faces but beneath the surface, they were freaked out and I knew it AND there was NOTHING to say to make it better.  Smiles dually noted; it is not a sign that everything is okay but instead a coping mechanism strong parents hide behind.

When I told someone recently about the monthly follow up visits for Kennedy’s care, they brushed it off like a routine physical.  This person compared it to a physical your child goes through for school – height, weight, etc.  I was told that these clinic days were undeserving of a “work from home” day that my company graciously gave me when Kenendy was diagnosed (which I am so grateful for). I guess I need to understand that parents with healthy kids never will (and never should have to) understand the trauma of a blood draw on a 7 year old (and for the parents waiting for the results).  They don’t understand that clinic visits may span four-five hours, and that during that time you may hear another family on the other side of the room hear words that makes you physically ill – “your child has cancer”.  It is a day I wish on noone and NEVER would I compare it to a yearly physical.  Needless to say, I find it hard to even look at this person anymore.  It's hard for me to understand, this person just doesn't understand.

On to the future…

We are celebrating Kennedy’s big cancer win with a block party on September 6 and then head off on our Make-A-Wish trip on September 14.  We are staying at Give the Kids the World Village and spending days at Discovery Cove to swim with the dolphins, Disney World, Sea World and Universal Studios.  Needless to say, Kennedy is ecstatic and so are we. 

Every time we hug her, we are so grateful for the moment.  So many parents didn’t get this outcome and will never hold their child again.  We are forever thankful to our fabulous group of doctors (Manera, Sarvita, Hemmenway and now Suh), the great nurses in clinic (especially Anette – K’s favorite), Megan Gertz for all her kindness and support at Loyola, CureSearch for backing her protocol, MAM for giving me time to take K to all her appointments, to Gene’s company that granted the same, to my ROCK husband, to friends and family that stood by us,  and most of all Kennedy – for her unwavering spirit, her determination to smile while going through hell and her ability to beat this awful disease.