When Jake was 3 years old, he was playing in the street when another child rode their bike into him, knocking him down. Two days later (on Saturday, October 13, 2012) he bumped his shin on a chair and cried in agony. Much more than a normal bump. We took him to his pediatrician thinking that he had fractured his tibia and his doctor thought that was a possibility since he had fallen a few days before. She sent us for an X-ray that day. She called within the hour to say that there was concern for a bone infection and that we needed to go straight to the Children’s hospital in Atlanta. We spent four hours in the emergency room that night and left with the knowledge that it was not an infection. A call from his pediatrician the next morning introduced us to the words “Ewing’s Sarcoma” and we were referred to a rare tumor doctor to take the next step. His tumor doctor ordered an MRI to be completed three long weeks later. The MRI was “inconclusive” (although we believe that they were pretty sure it was cancer) and Jake was scheduled for a biopsy the next Monday. We had a wonderful weekend spending time together as a family – one last hurrah before the biopsy would change our lives forever. Unfortunately, the biopsy did confirm that his tumor was Ewing’s Sarcoma. We spent the morning calling our family, crying on each others shoulders, and planning for our next steps. We met his oncologist that same morning and scheduled his CT/PET scan to determine if his cancer had spread.
The results of the CT/PET scan showed that Jake’s cancer had not spread. The tumor was localized to his left tibia, however it was a large tumor. One week later, Jake had surgery to place his port as well as bone marrow aspirations to make sure his marrow was free of cancer. He began chemotherapy the same day.
After six rounds of chemotherapy, Jake was scheduled for limb salvage surgery on February 26, 2013. The surgeon removed about 70% of Jake’s left tibia and replaced it with a cadaver bone (allograft). He has two plates and 15 screws in his leg and is not allowed to bear weight on that leg until approximately November of 2013. That is nine months after surgery. On September 17, 2013, Jake had completed all of his post treatment scans and there was no evidence of disease.
Jake had his one year scans on September 15, 2014. His scans came back clear and showed no evidence of disease! Jake is now one year NED, in kindergarten, and our hero. His limb salvage surgery is still in tact (a year and a half out), even though he tests it by running and jumping like a little boy should every day.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!