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Why Cure Kids’ Cancer Now! Foundation?

Cure Kids’ Cancer Now! Foundation has 3 primary purposes:

1. To support research for pediatric brain cancers through raising money and funding clinical trials.

Thanks to Cannonball Kids’ cancer, a clinical trial has already been funded in Emmi Grace’s name- the Emmi Grace Applesauce trial. 

Teaming up with Hope4ATRT, we support the AT/RT Translational Research Program run through the Beat Childhood Cancer consortium.

We support CBTTC’s (Child Brain Tumor Tissue Consortium) efforts in collecting, maintaining and storing brain tissue tumor cells for use in clinical research.

2. To support inpatient kids with cancer and their families by funding the annual “Emmi Grace’s Birthday Gift” sending kids with cancer Home for the Holidays.

3. To educate the general public about kids’ cancers.  Education= Funding= Cure!

 

Cure Kids’ Cancer Now! Because Childhood Cancer is Brutal!

Per the National Cancer Institute 2018:

  • DIAGNOSIS:

    • 1 in 285 children will be diagnosed with cancer before turning 19.

    • Every day, at least 43 children will be diagnosed with cancer-that is nearly 16,000 per year in the US alone.

  • TREATMENT:

    • An estimated 50,000 children undergo treatment for cancer every year.   

    • More than 30% of children diagnosed with cancer will die within 30 years.

    • “Survivorship” is measured in terms of 5 years.  This means that if a child survives for 5 years post treatment, but then dies from the treatment in year 6, the statistics show her as a “survivor.”  

  • DEATH

    • Every day, 5 children in the US die from cancer- that is 2,000 children annually.  It is estimated that 250 children die from cancer daily worldwide.

    • 1 in 5 children diagnosed with cancer will die post treatment.  

    • The treatments available are just not good enough especially knowing that cancer is the LEADING CAUSE OF DEATH BY DISEASE in CHILDREN in this country- second only to accidents and killing more than all other diseases combined.

  • FUNDING
    • Sadly, government funding is nearly non-existent, so parents are left to fend for themselves.  Of the over $5 BILLION government spending on cancer research, less than 4% actually goes to research children’s cancers.  Let’s put that into perspective.  For 2017, those numbers were:
      $657 million to breast cancer
      $208 million to lung cancer
      only $185 million SPLIT between ALL pediatric cancers (many received ZERO)

We fight to honor our Emmi Grace.  We try to emulate her strength as we move forward.

We fight to honor Zion, Isabella, and all others diagnosed with AT/RT.

We fight in memory of all of the children who have been diagnosed with AT/RT or other cancers.

We fight because we believe that we (as a whole) can do better for our children.  

We fight because we want other families to experience the love and support that they need.

We fight because we never want another parent to experience the pain and loss of losing a child to cancer.

We fight because cancer took our daughter’s voice so we must be even louder now.

We fight because no parent should plan their child’s funeral!  

We fight for those who have lost their children to a childhood cancer or its treatment!

We fight for the family who was just told, “We are sorry, but your child has cancer.”

We fight for the family who was just told, “We have no more options.”

We fight because we can!

We fight because we must!

We fight because childhood cancer warriors are TINY but TOUGH and together we will CURE KIDS’ CANCER NOW!

 

 

Why did we start Cure Kids’ Cancer Now! Foundation?

Emmi Grace Angel was born in December 2015.

In mid-April 2016, she was admitted to St. Joseph’s Hospital due to hydrocephalus (swelling in her brain).  Doctors were able to quickly see in her MRI that she actually had a massive tumor on her brain stem.  The amazing surgeons at St. Joseph’s Hospital in Tampa saved her life by removing as much of the tumor as possible.

 A few days later, the diagnosis was given, AT/RT, an aggressive brain cancer that almost exclusively attacks children under 3 years old.  Treatment options are so limited and so toxic for babies and children that a less than 1% chance of survival was given.

Her parents, guided by her physicians, chose to fight the cancer as aggressively as possible.

She underwent another surgery to place a “Broviac” double lumen port into her heart.  Then another to place a gastrostomy-jejunostomy tube “G-J tube” for feeding and medicine delivery.  The tumor, plus multiple intubations, wreaked havoc on her vocal cords and as a result, Emmi Grace had issues breathing from this point forward.  Her voice was never heard again.

At this point, she also lost the ability to regulate her own body temperature.  She lost the ability to cry with tears.  She would wimper in pain.

In late April, Emmi Grace was transferred to Arnold Palmer Hospital in Orlando for treatment with a team of Pediatric Neuro-Oncologists had previously treated the “rare” AT/RT before.

Upon arrival, she underwent another MRI and another brain surgery.  This time, her Pediatric Neuro-Surgeon placed an “Omaya Reservoir” which is an intrathecal catheter to deliver chemotherapy drugs directly to the tumor bed and a shunt to relieve the hydrocephalus (fluid build-up in her brain).

In May, Emmi Grace’s adoption was finalized in the PICU of Arnold Palmer Hospital as she recovered from her first round of chemotherapy.

Emmi Grace spent most of May in the PICU at APH.  At one point, she was transferred to the Oncology floor and had to be rushed back down to the PICU as they were not adequately able to monitor an infant in her condition.  She also spent a few weeks in the Special Care unit at APH receiving care from some of the best pediatric nurses who cared for Emmi Grace and the whole family.

By the first week of June, her body could no longer tolerate the chemotherapy.  Her heart, lungs, liver, and kidneys were all negatively impacted.  Chemotherapy had destroyed her body.

After consultations with her doctors and prayerfully considering all options, her parents decided to stop treatment and put Emmi Grace’s comfort as the top priority.  Without treatment, the tumor would regrow.  But the treatment was now causing her immense pain with no hope of it ever being successful.  Her parents decided to take her home on hospice care.

On June 10th, Emmi Grace took her last breath in an ambulance on her way out of the hospital.

In her short life, Emmi Grace was powerful.  Her story generated immense amounts of love and support.  Her strength inspired hundreds.  Her parents stood in awe of the world that rallied around them.  Support from friends, family, strangers was overwhelming.  The family remains forever grateful.

 But the family also knows that there are literally tens of thousands of families in this fight and many do not have the support that they did.  They decided to start Emmi Grace’s Angels Foundation (501c3 formed in August 2016) as a way of honoring the memory of Emmi Grace but also to pay forward the generosity they received.

Throughout the following 3 years, the Foundation grew and joined forces with other families wanting to make a change.  While the Foundation was able to provide meaningful support to families through projects like Emmi Grace’s Birthday Gift, sending children home for the holidays, the drive to fund research grew stronger.  The Foundation always wanted to provide families with the gift of time- knowing it is the one most valuable thing we have.  As the Foundation grew, the Board and Parent Advisory Council agreed: the best way to give time is to give life and the best way to give life is through funding research.  But we cannot do it alone.

Joining together as Cure Kids’ Cancer Now! Foundation, we will put our primary focus on funding innovative research into less toxic treatment options designed specifically for children with cancer.

In honor of Emmi Grace, the tradition of her birthday project will continue gifting St. Joseph’s Children’s Hospital each year to cover the costs of children with cancer going home for the holidays.

We are humbled and grateful for the generous support of loved ones, friends, strangers, corporations, schools, and YOU!  Thank you for your interest in supporting us while we work to Cure Kids’ Cancer Now!

Cure Kids’ Cancer Now! Foundation has 3 primary purposes:

1. To support research for pediatric brain cancers through raising money and funding clinical trials.

Thanks to Cannonball Kids’ cancer, a clinical trial has already been funded in Emmi Grace’s name- the Emmi Grace Applesauce trial. 

Teaming up with Hope4ATRT, we support the AT/RT Translational Research Program run through the Beat Childhood Cancer consortium.

We support CBTTC’s (Child Brain Tumor Tissue Consortium) efforts in collecting, maintaining and storing brain tissue tumor cells for use in clinical research.

2. To support inpatient kids with cancer and their families by funding the annual “Emmi Grace’s Birthday Gift” sending kids with cancer Home for the Holidays.

3. To educate the general public about kids’ cancers.  Education= Funding= Cure!