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 backs 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 http://www.chicagotribune.com/suburbs/arlington-heights/community/chi-ugc-article-edan-gelt-of-palatine-named-2017-curesearch-2017-07-18-story.html announcing the appointment ran in the Daily Herald ran and Chicago Tribune and, Kennedy personally received a note from a Palatine State Representative as a result!

Edan Gelt daughter Kennedy
Edan Gelt daughter Kennedy

I love CureSearch because the protocol the supported 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 a donation 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

Originally posted:  https://mylittlekennedy.blogspot.com/2017/08/kennedy-update-and-curesearch.html

Advertisements

Chicago Mom of Young Cancer Survivor Joins CureSearch Event as Publicity Chair

Edan Gelt is a Chicago business consultant and mom of two – Kennedy, 10 and Maddox 12. She’s also the 2017 publicity chair for the CureSearch Chicagoland Superheroes Unite! event.

Edan became involved with CureSearch after her 4-year-old daughter, Kennedy, was diagnosed with leukemia on February 2, 2012.

It all began when Kennedy began exhibiting strange symptoms, like coughing, exhaustion, nausea and difficulty urinating, over a 2-month period. Despite numerous trips to the pediatrician, she remained undiagnosed. It wasn’t until the pediatrician ordered a blood draw, and after checking into Loyola Medical Center in Maywood, Illinois, that they heard the devastating news – cancer.

“It was a whirlwind – the day after she was admitted, they surgically inserted a port and started chemo infusion,” says Edan Gelt. “We met with Dr. Ricarchito Manera, a brilliant and kind doctor, who patiently sat down and gave us a protocol for her first 29 days called induction. He explained that after induction, she would be put on a randomized study, backed by CureSearch. The study would be based on her risk assessment from a bone marrow test.”

After a 5-day stay, the family returned the next day because Kennedy had a fever that she couldn’t shake. They spent the next month in the hospital, with Kennedy being poked and prodded, swallowing disgusting medication and having several blood transfusions, scans and tests during her stay.

 Edan Gelt Daughter and Husband

“She was so strong, so resilient, and trusting. She morphed into a tiny superhero, and we called her Princess K.”

Edan Gelt and husband alternated stays at the hospital, becoming ships passing in the night. Their son Maddox, who was 7 at the time, cried when they told him about his sister – more so because she got to have a sleepover and he didn’t. He also didn’t understand what leukemia was.

After 2 1/2 years of chemo treatment backed by CureSearch, Kennedy had her port removed and the chemo ended.

“One of the greatest gifts CureSearch gave Kennedy was the lack of cyclins in her trial. The standard leukemia treatment includes cyclin therapy, which has been known to damage the heart. Because of Kennedy’s risk level and the random protocol she received, her long-term effects of the chemo are less severe.”

Then on February 2, 2017, Kennedy celebrated her “cure” date from cancer, and she became Edan’s forever superhero.

While Kennedy was in treatment, Edan fundraised for the CureSearch Chicago Walk and helped raise awareness for the organization. Not knowing about CureSearch, her friends and family would donate to other organizations on Kennedy’s behalf, but the funds weren’t going directly to childhood cancer research.

“The problem is that children’s cancer can’t be treated like adult cancers because most of the treatments can be toxic to a child’s body, damaging their organs, mental health and more. To treat childhood cancer, specialized protocols are needed – like the lack of cyclins in Kennedy’s protocol.”

Edan Gelt believes in CureSearch, not just because of Kennedy’s amazing outcome, but because every dollar donated goes toward funding lifesaving research.

While working on public relations for CureSearch, she personally met and lost superheroes who weren’t as fortunate as Kennedy.

“Ana, Julissa, Tyler, Blake and so many others I met at the hospital while volunteering or while Kennedy was in treatment or no longer here to walk with us. It is for these amazing children, and children like them, that we need to continue to walk and fundraise CureSearch.”

The entire community is invited to join the Gelt family to celebrate Kennedy and all children with cancer – true superheroes – on September 24th at Boomer’s Stadium.

CureSearch Event Publicity Chair for Childhood Cancer

Edan Gelt is a Chicago business consultant and mom of two – Kennedy, 10 and Maddox 12. She’s also the 2017 publicity chair for the CureSearch Chicago Superheroes Unite! Event. Edan Gelt became involved with CureSearch after her 4-year-old daughter, Kennedy, was diagnosed with leukemia on February 2, 2012.

It all began when Kennedy began exhibiting strange symptoms, like coughing, exhaustion, nausea and difficulty urinating, over a 2-month period. Despite numerous trips to the pediatrician, she remained undiagnosed. It wasn’t until the pediatrician ordered a blood draw, and after checking into Loyola Medical Center in Maywood, Illinois, that they heard the devastating news – cancer.

“It was a whirlwind – the day after she was admitted, they surgically inserted a port and started chemo infusion,” says Edan. ” We met with Dr. Ricarchito Manera, a brilliant and kind doctor, who patiently sat down and gave us a protocol for her first 29 days called induction. He explained that after induction, she would be put on a randomized study, backed by CureSearch. The study would be based on her risk assessment from a bone marrow test.”

After a 5-day stay, the family returned the next day because Kennedy had a fever that she couldn’t shake. They spent the next month in the hospital, with Kennedy being poked and prodded, swallowing disgusting medication and having several blood transfusions, scans and tests during her stay.

“She was so strong, so resilient, and trusting. She morphed into a tiny superhero, and we called her Princess K.” Gelt said.

Edan Gelt and husband Gene Khalimsky alternated stays at the hospital, becoming ships passing in the night. Their son Maddox, who was 7 at the time, cried when they told him about his sister – more so because she got to have a sleepover and he didn’t. He also didn’t understand what leukemia was.

After 2 1/2 years of chemo treatment backed by CureSearch, Kennedy had her port removed and the chemo ended.

“One of the greatest gifts CureSearch gave Kennedy was the lack of cyclins in her trial. The standard leukemia treatment includes cyclin therapy, which has been known to damage the heart. Because of Kennedy’s risk level and the random protocol she received, her long-term effects of the chemo are less severe.”

Then on February 2, 2017, Kennedy celebrated her “cure” date from cancer, and she became Edan’s forever superhero.

Edan Gelt
Kennedy Khalimsky, daughter of Edan Gelt

While Kennedy was in treatment, Edan fundraised for the CureSearch Chicago Walk and helped raise awareness for the organization. Not knowing about CureSearch, her friends and family would donate to the American Cancer Society or Leukemia and Lymphoma Society on Kennedy’s behalf, but the funds weren’t going directly to childhood cancer research.

“In fact, only 4% of funds go towards childhood cancer research. The problem is that children’s cancer can’t be treated like adult cancers because most of the treatments can be toxic to a child’s body, damaging their organs, mental health and more. To treat childhood cancer, specialized protocols are needed – like the lack of cyclins in Kennedy’s protocol.”

Edan believes in CureSearch, not just because of Kennedy’s amazing outcome, but because every dollar donated goes toward funding lifesaving research, While working on public relations for CureSearch, she personally met and lost superheroes who weren’t as fortunate as Kennedy.

“Ana, Julissa, Tyler, Blake and so many others I met at the hospital while volunteering or while Kennedy was in treatment or no longer here to walk with us. It is for these amazing children, and children like them, that we need to continue to walk and fundraise CureSearch.”

The entire community is invited to join the Gelt and Khalimsky family to celebrate Kennedy and all children battling cancer – true superheroes – on September 24th at Boomer’s Stadium.

CureSearch for Children’s Cancer, a national nonprofit organization based in Bethesda, Md, works to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame.

CureSearch is building a $10 million research pipeline to aggressively drive pediatric research grants and clinical trials that have a higher chance of becoming cures for children’s cancer without the toxic side effects that plague current treatment options.

CureSearch 2017 Chicago Walk

This year I am the public relations chair for the CureSearch Chicago Superhero Walk.  CureSearch was one of the first organizations I was introduced to when my daughter Kennedy was diagnosed with cancer in 2012 at the age of 4.  CureSearch was the logo on the stationary I took notes on.  It was the organization that sponsored the experimental protocol my daughter received after day 29, post induction.  CureSearch was also the beneficiary of the walk I attended in September 2012, only 4 months after my daughter was diagnosed.  To me, CureSearch is synonymous with childhood cancer research.

If Kennedy were diagnosed with ALL Leukemia in 1967, we likely wouldn’t have celebrated her 10th birthday last month.  In fact, only 4% of children diagnosed in the 1960’s with low-risk ALL Leukemia survived; today 94% do.   Although the 5-year survival rate for some childhood cancers has increased drastically over the past 50 years, still nearly 2,000 children under the age of 19 die each year – making cancer the leading cause of death by disease in children in the US.  42 children are diagnosed in the each day!

 Edan Gelt CureSearch 2017 Chicago Walk
Edan Gelt CureSearch 2017 Chicago Walk

While working on public relations for CureSearch, I personally met and lost Superheroes that lost their battle with cancer – Ana, Julissa, Tyler and Blake.  It is for these amazing children and children like them that we need to continue to walk and fundraise for Children’s Cancer Research.

Why CureSearch?

Edan Gelt believe in CureSearch because for every dollar donated, 58% goes toward children’s cancer research and education projects and 31% for fundraising to secure the funding to do it. Only 11% of every dollar goes toward operating the organization.  This says a lot.  There are many great organizations out there like the American Cancer Society or Leukemia and Lymphoma Society that fund cancer research but only 4% is dedicated specifically to children’s cancer research.

Children’s cancer can’t be treated like adult cancers because most of the treatments can be toxic to a child’s body, damaging their organs, mental health and more. To treat childhood cancer, specialized protocols are needed.

To help fund the future of cancer-fighting superheroes, join CureSearch on Sunday, September 24, 2017, at the Boomer’s Stadium, 1999 South Springinsguth Rd., Schaumburg, IL 60193.

Find CureSearch on Facebook @CureSearchChicago

Signup to walk at www.curesearchsuperheroes.org/chicago

By:  Edan Gelt

CureSearch Chicago Walk Chair