It's Been Too Long!

Here we are again. September, Cancer Awareness Month. Its been quite a bit since ive kept up with this blog.  So much has happened since then, so buckle up. This is going to be one heck of a post. 

Honestly, ive been dreading writing here for a while. Its hard for me to look back when life is moving so fast. Sometimes I wish to put aside this part of my life. Its hard for other people to digest the fact that cancer could be so close in anyone's life. I don't want to be viewed differently just because of that. But i've come to terms that this is a very important part of who I am and I think i'd like to preserve the memories that make me who I am.

Throwback to March. Make a Wish had a small zoom meeting with my mom and I. We wanted to get involved more and give back the same way they did for me. Little did we know, they were interviewing me. For what you may ask? Well, a few weeks after that call, they asked me to be a Make A Wish ambassador for their annual gala. I was thrilled!

Shortly after we said yes (without hesitation), they came to my house to interview and document a video of my parents and I. They asked us questions about my treatment, about my wish, and how it impacted me. It stirred up a bunch of emotions I forgot were even there. That same night, they asked if i'd be willing to dance at the event. I hadnt danced in a few months, so I was a bit nervous but I couldn't have said yes any quicker. It was like a dream come true. 

We called on one of my favorite teachers/mentors, Hanna Bricston, to choreograph a solo for me. Another dream come true! I practiced for just a month with different coaches and in any space I could find. 

When the time came of the event, they treated my family and I like celebrities. I got a full dress rehearsal, by myself along with a second one with the other wish kids. They also provided us with a hotel stay at Navy Pier. When we arrived, they presented me with a banner to display myself with to make sure everyone knew who I was. They also gave me a person to hold my stuff and help me through the night. I called her my stand in grandma. 

People congratulated me just for being me. It was crazy cool. 

The bulls bucket boys opened up the event - followed by the other wish kids and I who co-mc’d the night alongside Samantha Chatman. Later, I performed. It felt a bit rough but I couldn't care less. I had just danced on a stage in front of almost 800 people. I will never forget that moment. They introduced the mission, Martin Short put on a comedy skit, and we ended the night off with music and dancing. My dad and I went crazy on the dessert table too! Back at the hotel, my dad quickly fell asleep. My mom and I on the other hand stayed up past 2 am looking at our skyline view and reminiscing about the beautiful night, hoping it would never end.

That experience will live in my heart forever. Make a Wish is truly magical and I couldn't be more grateful to help them in such a way that it felt like a second wish for me. 

Fast forward to August. I started off sophomore year a bit rough with my social life but its starting to make sense a little more everyday. More the social part, the learning part still gets me. Speaking of which, because of my treatment, I was provided with a 504 plan for school which technically just gives me extended time on work and tests. I can't help but be a bit embarrassed to use it. I daze off often and find it hard to complete or understand my work quickly. It's not that I'm bad at school, it just takes me a bit longer to process. I have to continue to remind myself why I have this plan and that I should use it more often. Crazy, I'm sharing this online, but I think it's important to acknowledge the everlasting side effects of the treatment I received at such a young age. It's not a huge deal, but it's definitely something that crosses my mind often. 

Also, in August I officially became 8 years out of treatment or 8 years cancer free, as you will. I typically don't acknowledge it too much but this year I shared that information with my closest friends. My long distance best friend was probably more excited for me than myself. Life is too short not to celebrate the small victories that pass by. Its important to make the best of any situation. My parents taught me that. 

Now, September. It's Childhood Cancer Awareness month. A month I'd hope would be acknowledged a bit more. I think people don't realize what this situation is like and how it affects around 15,780 kids and their families each year. The constant doctor visits, the frequent scares, the weekly chemo, which may I add, could kill the child (but in most situations, that's the only option), plus so much more families should absolutely not have to deal with. It breaks my heart when I see such a familiar experience affecting others. Maybe it is just because it hits so close to home that I care so much, but so what. Others should care too. Cancer is real, cancer is scary, and cancer can happen to anyone. Even kids. Around 47 a day in the U.S. So this September, I encourage you to research a little, see the impacts, and hopefully give a little. It doesn't take much to change someone's life, especially when they really need it. 

Lifes crazy sometimes. Im more than lucky to have my amazing family to guide me through it. My moms my best friend, my dads my biggest supporter, and my brother always has my back. Not to mention other friends and family who are always there for me (like my best friend, Abby). I'm beyond grateful to be able to have this life. I Couldn't be happier to be able to live it. So, that’s about all I have to say for now. 

Until next time, with much love and kisses, 

Kennedy

Here are some charities that I love:

Make-A-Wish Illinois  

Special Spaces

Bear Necessities

Cal’s Angels

CureSearch

7 Years Out of Treatment

Today marks seven years since my last port access meaning I'm officially seven years out of treatment! Today is also my first day of quarantine for I was just diagnosed with covid yesterday. Although I'm absolutely devastated about having to miss my first few weeks of highschool and being unable to dance at my very first football game, this blog subtly reminds me that it's not the end of the world. I know that there are so many cancer kids out there that are unable to do even the smallest of things like going to school in risk of getting covid. I couldn't even imagine what they're feeling right now. It compels me to remember that I am beyond fortunate for everything I have; good or bad. Anywhere from this situation to being the worst in the room at dance to breaking my foot, there will always be a bright side to everything (even if it's hard to see sometimes). 

So here's to another year of many (occasionally sucky) eye-opening experiences.

To an abundance of health and happiness, cheers! 

Love, Kennedy

P.S Little fun fact, 7 happens to be my favorite number because I was age 7 when I got out of treatment!

Fremd Poms team

Things I'm excited for this year:

• I just started high school
• I made varsity poms!
• My family and I are getting involved with the charities that made a great impact on my life during treatment ( like Special Spaces and Make A Wish)

Special Spaces Dream Big Gala

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