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.

 

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   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 our ‘Why”’.

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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’.