Stories

Eli “Wear ‘Em Down” Waehrer Faces Alveolar Soft Part Sarcoma

April 2, 2015

Story by Elizabeth Waehrer

Eli’s story begins in January of 2014 when he was 11 years old. He is a very active boy who loves his sports. At that time, Eli was playing basketball when he got hit in the right thigh. Shortly after, he noticed a “lump” deep in his leg. We all thought it was a result of the basketball injury. In June, his leg got hit again and Eli was thinking the “lump” had gotten bigger. By August, the “lump” was definitely bigger. There was a serious bulge on his thigh. That was when we knew we had to see the doctor. That Monday we saw a pediatrician that recommended an ultrasound. After the ultrasound things moved very quickly. Tuesday was an MRI on his leg and Wednesday we were in Dr Prauner’s office at Randall Childrens Hospital. It was determined that the mass would need to be removed. On September 3rd, Dr Cynthia Gingalewski removed the tumor and at that point we were told it was some sort of sarcoma. Early the next week Dr Prauner called and told us it was looking like it was Alveolar Soft Part Sarcoma and they had sent a piece of the tumor to LA Childrens hospital to confirm the diagnosis.

Since the diagnosis of such a rare cancer, we decided that it was in Eli’s best interest to get some second opinions. In Dr Prauner’s 20 year career he had never seen this particular cancer. Eli had three scans after his surgery that showed the cancer had not spread. We made arrangements to see Dr Suman Malempati at Doernbecher Children’s Hospital who is a pediatric oncologist that specializes in sarcomas. He currently has another patient with ASPS. It was his opinion that since all of Eli’s scans came back clean, to have a second surgery and take more tissue. If that comes back negative for cancer than follow up with scans. That was Dr Hawkins opinion as well. Dr Hawkins is a pediatric oncologist that specializes in sarcomas as well and he is at Seattle Childrens Hospital. In Dr Hawkins’ career, in the last ten years, he has had five patients with ASPS. After the visit to Seattle, Eli, Chris, and I decided we would have Dr Malempati take over Eli’s care.

At Christmas time, Chris felt another “lump” at the end of Eli’s scar. It turned out to be a recurrent tumor which was surgically removed by Dr Gingalewski. The tumor was very small and some of the tissue on one end was tested positive for cancer cells. More scans showed the cancer had not spread. Eli is currently going through radiation. Today was his 14th day. He has 19 more days left. We are all hopeful for a full recovery for Eli. Our biggest piece of advice is to keep positive. At one point Eli told me that he was too cool for cancer. I knew then that Eli had the attitude and the strength to beat this disease.

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