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.

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!