Emma’s Journey

My daughter Emma was diagnosed with Ewing’s Sarcoma this last February 2012. She has had a painful long road up to her diagnosis. We are Military and had moved to our current location in Bellevue, Nebraska over the summer of 2011. Emma’s symptoms started in late October. She starting presenting with back pain. After several visits to the Doctor they decided to send her to physical therapy for a pulled muscle. After some weeks had gone by she was getting no relief from Physical Therapy and inflammatory medications. We returned back to the Doctor for more solutions to her pain. Along with her back she had started to notice some hip pain as well. Once again we were referred to the Physical Therapist for further reconditioning. The physical Therapist was puzzled to her diagnosis from her Doctor. She wasn’t getting better and was having more pain and decrease range of motion happening in her leg. Once again we were back in the Doctors office. By now Emma had missed some days from school due to leg weakness, back pain and leg pain. I didn’t know what was happening to her but I did know that whatever it was it was ruining her ability to function in everyday daily activities. She was starting to isolate herself from activities with her friends and things at school. We revisited the Doctor and this time I was armed with questions and demands. The Doctor had ordered a MRI of her back to see if she had a herniated disc and a x-ray of her hip. Her hip pain was becoming unbearable at times. The x-ray came back fine, no noticeable defects or problems. Meanwhile the Doctor had referred us to a Sports Medicine Doctor. We had to wait once again for the appointment. There was no urgency at the time. The Sports Medicine evaluated her and was in agreement with the Pediatrician with it being a muscle problem. He decided to order more views for the MRI. Her back,pelvis,hip. Once again we waited for that appointment, meanwhile she was continuing to be in pain. It was finally appointment day for the MRI. A couple hours later I had received a phone call stating they see some sort of something on her MRI in her Femur. It was possibly a fracture. The following morning we went to the clinic for a CT scan and after her scan we sat for several hours with no news of what is the next step. The Pediatrician, Sports Med Doctor and Radiologist were all in agreement that she was to go immediately to Children’s Hospital in Omaha. They were unsure of what they were looking at on the scans. After several hours and many Doctors later they decided to release her from the hospital. The Hospitalist referred her to a Orthopedic Surgeon and a Pediatric Rhuematologist and all out patient. She went through more tests that following Monday. Between the Orthopedic Surgeon and the Rhuematologist she was diagnosed with a Rhuematological disease. Emma’s pain was very aggressive and it was not consistent with the diagnosis. Over several weeks Emma was getting worse and basically couldn’t walk anymore. I was taking her in to the ER for pain & dehydration. Finally after several ER visits they admitted her. I was so relieved! Finally someone was seeing how much this girl was suffering! We needed a bone biopsy to rule out bone infection so she could take the much need steroids to control her inflammation in her leg which would help with the leg pain. The Pathologist could not give a diagnosis. Still in question what was causing all her pain the Hospitalist called in the Hem/Oncology Doctor to evaluated Emma and all her test to see if they felt they had enough reason to perform another biopsy, this biopsy was more intrusive then the last. It would leave her with a 2 inch scar on her thigh and also preforming other biopsies of bone marrow. They performed the biopsy of her Left femur and it was positive for Ewing’s Sarcoma. Finally we have a diagnosis! We were devastated but now she can be treated with the medications she needs. You are told it’s something else and after awhile you believe it. Emma started her aggressive Chemo treatments. We are all trying to understand why her journey to her diagnosis took so long. With Emma’s story I can only hope that another family doesn’t have to go through what we did and watch for so long their child in pain. She has a long road ahead of her. Reading other stories of cancer survivors gives us hope that she too can beat this!

March 22, 2012 by  
Filed under Newly Diagnosed

  • JPriest

    My brothers story is the same…back and forth to physical therapy for about 6 months then a Ewings diagnosis. Stay strong Emma!!!

  • Jane

    My son 13 has just been diagnosed with osteosarcoma. Our hospitals in London were pretty good at quick diagnosis. Bone cancers (sarcomas) are rare thats why they sometimes take time to diagnose I think

  • Elyssa

    My name’s Elyssa and I’m 14 and i was also diagnosed with Ewings Sarcoma in my right femur in february 2012 also!! I hope everything is going well for Emma!!! =)

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