Why We Fight

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, ATRT, an aggressive brain cancer that almost exclusively attacks children under 3 years old.  Treatment options are so limited that a less than 1% chance of survival was given. 

Her parents 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 as they had previously successfully treated one child with ATRT before.

Upon arrival, she underwent another MRI and another brain surgery.  This time, her 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.

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 a foundation in memory and in honor of their daughter Emmi Grace.

Emmi Grace’s Angels has 3 primary purposes:

1. To support the families who are currently in the fight against pediatric brain cancers.  More specifically, to support families whose children are inpatient.

When Emmi Grace had to be moved to Orlando (from Tampa), Mom went with her.  Thankfully, Dad’s employer was extremely understanding and allowed him to take time off of work to be with his wife and children.  However, Mom and Dad could not care for big sister (who was only 16 months at the time) so Mom’s parents stepped in and cared for big sister while Emmi Grace was receiving treatment.

Eventually, Dad had to go back to work.  The family was split in half.  Dad and big sister in Tampa.  Mom and little sister in Orlando.

Thankfully, there were some foundations in Orlando who stepped in to help Mom and Emmi Grace.  For example, Angela and Danielle with Toys from Tyler brought Mom a stool.  You see, there were no seats for Mom in any of the many hospital rooms they stayed in- none that were tall enough to sit by Emmi Grace’s bedside.  TFT brought one for Mom so that she could stay with Emmi Grace day and night.  Others brought gift cards for gas since Dad was driving to and from Tampa so often.  Others brought food.  Others brought toiletries. Others made sure that the grass was mowed at the family home. The list goes on.  The family learned that they were not alone.

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

Thanks to our friends at Cannonball Kids’ cancer, a trial has already been funded in Emmi Grace’s name- the Emmi Grace Applesauce trial.  We continue to support Cannonball Kids’ cancer and their amazing work funding innovative pediatric cancer research.  Together, we WILL create more options together. 

3. To raise awareness for pediatric cancers.  We believe that awareness=funding=cure.

Why We Fight

We fight because once we witnessed the brutality of children’s cancers, we could not un-see it.

Per the National Cancer Institute 2018:

  • DIAGNOGIS:

    • 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! 

  • 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.

  • DEATH

    • Every day, 5 children in the US die from cancer- that is 2,000 children annually.  It is estimated that 350 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.

We fight because we must!  

  • 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, and

    • only $185 million SPLIT between ALL pediatric cancers.

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

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 we felt when Emmi Grace was diagnosed.

We fight because we never want another parent to experience the pain and loss we feel every day.

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

We fight because our daughter should not have died.  No one’s should!  

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! nearly