Mercedes first noticed she had a large “lump” on her lower leg back around Thanksgiving of 2017. We didn’t think too much of it at the time, but by mid December it looked like it had grown so I called her pediatrician and made a routine appointment for after the holidays. By December 30, the lump had nearly doubled in size and she was beginning to have some pain in the area so her father took her to the emergency room. They did a CT scan but it was inconclusive. They referred us to a surgeon. Due to the proximity to her spine, he referred her to an orthopedic specialist who then ordered an MRI and a biopsy of the lump. The surgeon called her father on January 31, 2018 to tell him that the preliminary results showed that the lump was a cancerous tumor and that he had put in a referral for her to be seen at the Children’s Hospital of Wisconsin’s MACC Fund Center for Cancer and Blood Disorders. My ex husband called me at work at 10:14am and told me the news and the next day we were sitting in a consult room meeting with Sadie’s oncology team.
Sadie handled the treatments relatively well. She had approximately 14 blood transfusions and 2 platelet transfusions over the course of her 8 month treatment. We were able to find the right combination of medications that controlled her nausea for the most part, but she was still extremely tired and got worn out easily. She spent a lot of time sleeping during her treatments. She battled through 2 bouts of pneumonia, 4 trips to the emergency room (once by ambulance) for fevers, dehydration and a broken foot that took a good 3 months to heal. She had surgery on May 10, 2018 where they removed 1/3 of her back muscle along with the tumor that was in her back muscle.
I had to take a long term leave of absence from my job. We live an hour away from the hospital and between her inpatient stays and unexpected ER visits, my fiancée and I thought it best that I not work. We spent many hours in the car driving to and from Children’s Hospital. Sadie would be admitted for either 2-3 days or 5 days depending on which chemotherapy drugs she was getting. During those inpatient stays I would stay with her, sometimes getting a room at the Ronald McDonald House. That meant being away from my other daughter and son for days at a time. Her and her siblings have had to grow up faster than they should have. They have had to face issues no child should have to face.
Sadie was declared No Evidence of Disease on her 16th birthday, September 14, 2018! It was the best birthday gift ever! She now has MRI and CT scans and a clinic appointment every 3 months to make sure that the cancer is not coming back and make sure everything is going well. She spent the entire second semester of her freshman year of high school being home schooled. She has been back since the beginning of school and hopes to one day become a nurse herself.
Hope session by Sarah Kopf Photography | Facebook