Around 12 months of age, Emmie, one of our Elevate kids, underwent a series of medical tests/surgeries/procedures for interrelated heart and kidney issues. Her cardiologist at Riley Hospital sent their family to MOTTS Children’s for a vascular study. In December 2016, 3 surgical teams spent 11 hours widening her aorta, and completed right renal bypasses to the right kidney and a partial left nephrectomy—they discovered during this surgery she had a Wilms tumor with ‘favorable histology’ .

[Learn more about Wilms tumor HERE]

     After initial treatment for Wilms her family received good news in time for Christmas that she was NED (No Evidence of Disease) but in September 2017, Emmie’s cancer returned in her spleen which was removed and began chemo once again during fall break, and the following 9 months, before again being deemed “cancer free” in April of 2018. In October 2018, the cancer metastasized in her liver, lungs and kidney. 7 tumors were removed and she again started chemo; this time it was in-patient for five days at a time for a year in addition to 12 photon radiation treatments. She underwent genetic testing and they found CLOVES syndrome [more HERE on CLOVES] which was related to a PIK3CA mutation in her tumor and explained her complex medical condition. Emmie finished her treatment in November 2019, and was again “cancer free”.

   

In 2020 she had surgery to correct a 110° curve in her spine. Days later, her doctors noticed new “spots” in her lungs, one of which was another Wilms tumor. At the next scans they found three more tumors: one in her kidney and two in her liver and went back on chemo to try to keep them from growing, while hoping for a drug trial.

    In August of 2020 she started a trial drug, which shrank and stalled tumor growth. In October she was removed from the trial when she was hospitalized with covid for ten days, three of which she spent on a ventilator.

She was allowed back on the trial until her next scans showed that her tumors had grown by 30%. Her family was told that she was no longer eligible for any drug trial due to the exclusion requirements.

Emmie started Vincristine, which gave her terrible side effects. She then went on Cabozantinib, but because it wasn’t FDA approved for children it was denied twice and meanwhile went four weeks with an actively growing tumor without treatment while her family fought for this medication.

After a year of no growth, the skin lesions from the drug were becoming too much.

   The next drug, Alpelisib, had recently been approved for PIK3CA related tumors, and had shown great promise while treating her tumors in lab mice. She started this drug in June 2022. By August, her tumors were growing again. Emmie chose to stay on the medication, but increase the dosage.

The tumors continued to grow.

   This time the liver was almost completely consumed with the tumor. Emmie wasn’t done fighting. She went on cyclophosphamide in hopes that another drug would come available. Emmie only made it through 5 days of chemo before getting admitted to Riley with a fever. The cultures showed an infection in her body, and over a few days she became septic

Emmie died peacefully in her sleep on October 13, 2022 at 8:32am.

We have to do better for our children! Saying goodbye to my daughter is the hardest thing I have ever done. Watching your child die is something no one should have to do. Navigating life without your child is something no one should have to do.” says Emmie’s mom Tracy.

 

—————————————

   Despite the immense grief of losing her child, Tracy has channeled her strength into advocacy and fundraising efforts to support Elevate in our efforts to dramatically improve and save the lives of those diagnosed with childhood cancer.

   To read more about our Elevate Wilms workgroup that Tracy is a part of, a vital piece to the core of Elevate, or be inspired about her fundraising and advocacy efforts visit the links below. 

Visit Emmie, our first Elevate kid  [Link HERE] it’s easy to see why Emmie is part of ourWhy”’.

—————————————

It’s not just those impacted by childhood cancer that need to be a part of the change, even you can be a part of a brighter future for our kids! 

Take Kidney Cancer Awareness to the next level this March:~

~Share Elevate’s mission with those you know- by word of mouth, email, share us on social media!

~Want to celebrate your birthday in a meaningful way this year? How about a virtual fundraiser for Elevate this year? We can set it up for you! 

~Host your own fundraising event this year? 

Or simply donate HERE!

Thank you for your support! You will be a part of changing the lives of those impacted by childhood cancer. And helping ‘kids be kids’.



 

 

 

Elevate kid Emmie!

Visit Emmie, our first Elevate kid here, it’s easy to see why Emmie is our ‘Why’.



Awareness and Advocacy

Last January Tracy was already on a mission of her own and headed to the Indiana Statehouse, along other childhood cancer advocates from across the state, armed with the six-years of treatment protocols her daughter Emmie courageously faced. 

EmPower Scores BIG!

A cascade of support with fundraising, awareness and advocacy:

Teddy Bears and Cancer Research

The Em’Power‘ of T-shirts

Elevate Your Fitness & Pediatric Cancer Research with DUAL INSTRUCTOR SPIN!

EmPower’s Kitchen Warriors: Cooking with the Kirks!

 

ELEVATE at the FDA

  "      "Making more drugs available to kids with cancer means solving a million small problems. Yesterday’s event provided a necessary opportunity to bring more and more of those problems to light. If we can identify the problems, name the problems, then we can...

Tatum and Maisie Moving Mountains

"The challenges of being a pediatric cancer family are innumerable. Every time you think you’ve found the worst thing, something else rears its ugly head. These past few weeks we’ve witnessed a hefty serving of that humanity, led by two young girls, Tatum Pillor and...

Outwork the Noise

Don’t listen to those voices. Let your hard work, sweat and exertion drown out the noise.  Outwork the noise. -Justin Spoon Outwork the noise means something different for each of us. Robyn Spoon, Elevate Founder shares what this meant to Justin, and what it means to...

A Son, Brother, Collegiate Runner and Asbury Graduate Diagnosed with Rhabdomyosarcoma

"Today, you don't have to do something special. You don't have to do anything amazing or overwhelming. You just gotta get of bed and do something."    - Justin Spoon - A mother's share:     Sitting in a small Lexington, Kentucky clinic room with my then 21-year-old...

Ewings Sarcoma Mom Shares

"Her diagnosis story is probably best classified as ‘trust your gut and ask for the extra tests’."    - Aimee Formo, Ewings Sarcoma Survivor's mom & Childhood Cancer AdvocateGuest Blog by: Aimee Formo    Ewings sarcoma, also abbreviated EWS,  is an aggressive type...

Rhabdomyosarcoma: A Bereaved Mom Shares

Guest Blog by: Cindy Cleveland   Matt Cleveland 2/5/1997-3/8/2023  "From the time Matthew was little, he could most frequently be found playing baseball," Matthew's mom Cindy shares with Elevate.   "His love for the game started with T-Ball at the age of 4, continued...

First Look: Parents Share How They First Discovered Their Child Had Rhabdomyosarcoma

"A small, relatively painless lump near his left nostril had a name- Rhabdomyosarcoma"    - Robyn Spoon, Elevate CEO & Founder    "Rhabdomyosarcoma is rare, with only about 500 total diagnoses in the US each year and only a small percentage of those above the age...

Multi-Stakeholder Engagement for Wilms Tumor that Puts Children in the Center

“Organizing ideas for presentation is one of the best ways to learn. What we learn we can teach. I learned a new concept through working on the poster—design thinking. And learning about this subject was the beginning of teaching it in our role as advocates, a...

Elevate Wilms at the 12th International Pediatric Renal Tumors Biology Meeting

"Five years ago I was sitting across from the oncologists, today, I sit with them."    - C. Comer MTS, BSN, RN,Mike Ortiz, MD and Robyn Spoon, Elevate CEO       Great things that happened in New York to make a difference for Wilms tumor. Elevate Wilms...

Change Starts From the Ground Up

"Elevate provides a space to work towards solutions and a platform to make effective change."    - C. Comer MTS, BSN, RN,Guest Blog by: C. Comer MTS, BSN, RN       In the past, people with a common cause may have had coffee. Today, they zoom or form social media...

@2023 ELEVATE Childhood Cancer Research
and Advocacy, Inc.
is a registered 501(c)(3) non-profit organization.
EIN: 93-2185372

Join us! Stay up to date with our work and mission.

14 + 10 =

Please help keep our site secure and solve this problem.

We respect your privacy and will never sell or share your information.