Ethen’s Fight

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Ethen’s Fight, Changing the World For Kids with Cancer

“Although Ethen’s fight began five and a half years ago when he was diagnosed, it has never ceased to exist for us. Practically that looks like continual therapies, follow-ups and specialists as a result of his treatment; but deeper than that, there is a continual desire inside of us to fight for better for families who have and will come after us. We want to see more kids have a chance to LIVE and have “firsts” like Ethen has. 

We always wish we could do more, but we have learned that staying involved means being willing to keep hearing stories, to keep seeing faces and knowing needs, and to do whatever we can to help – no matter how “big” or “small”. We love partnering with ISF and sharing ISF’s vision with those who have come to love our little guy as we know that collectively all of our “small” can truly be used to push the needle forward in changing the world for pediatric cancer.” -Christie, Ethen’s Mom 

In early April 2017, Ethen was diagnosed with Stage 4 High Risk Neuroblastoma at 13 months old. After five rounds of chemo, Ethen had surgery to remove the remainder of the tumor in his abdomen and chest. He then had a stem cell transplant, 2½ weeks of radiation, and began antibody therapy. He made it through two out of five rounds of treatment in the hospital.

The third round of therapy was very difficult and landed him in the PICU, so he had to stop antibody therapy immediately. Ethen’s condition worsened considerably and his family was uncertain what would happen to him. After receiving a trial drug that had been tested to counteract the side effects that Ethen encountered, his body responded and he began his road to recovery. This antibody therapy for Ethen was a landmark case in neuroblastoma research in improving survival rates, but it is still a treatment that is terribly painful for patients.

“This is why more research is needed and why we support research funding going to the hospital,” said Christie. “We have been very encouraged by the Isabella Santos Foundation funding the Rare & Solid Tumor Program at Levine Children’s Hospital. The amazing care provided by LCH with ISF’s impact is significant for patients and families, and will lead to better cancer research.”

In May of 2018, Ethen’s parents received the best news – his scans showed no traces of cancer. Ethen and his family know precisely the importance of changing the world for kids with cancer and we are thrilled to have them as part of our ‘Change the World’ fundraising campaign. They have joined our 15th Anniversary Race as Team Ethen’s Fight are actively fundraising for kids with cancer. 

 We hope you feel inspired to help us change the world for kids like Ethen by donating. Your donation benefits the ISF Rare & Solid Tumor Program at Levine Children’s, a global program for kids battling rare cancers. 

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