Belle is the older sister of Schyenne. She is 15 years old and loves photography.
In July, 2017, when she was just 9 years old, Schyenne was diagnosed with Metastatic Osteosarcoma. For several weeks, she complained off and on about pain in her knee but it never was constant. She jumped on trampoline daily and rode her hover board around the driveway. We really thought she had just twisted her leg and it would heal. I’ll never forget that Saturday. We were at my niece’s birthday party. All of the kids were playing on the blow up water slide. Schyenne went up the ladder twice (very slowly). She asked if she could change her clothes and not slide anymore. Schyenne, my water baby, chose to sit in a chair beside me for the remainder of the party instead of playing in the water. WHAT!! We left there and had plans to meet her aunt for a quick dinner at Taco Bell before heading home. Half way there, I looked over and saw one single tear rolling down her cheek. This is my child that NEVER cried about anything. I immediately made a u-turn in the middle of 17-a and floored it to Moncks Corner ER. I just knew something wasn’t right. We didn’t say a word the entire trip to the hospital. What seemed like an eternity later, the dr finally came back in the room and asked me to step out. I almost couldn’t even get up from the chair. Why isn’t he just talking to me in the room? We walked to the xray room and he pulled up an image of her leg on the screen. He took the mouse and circled a spot around her knee. He asked me if I had ever heard of the words sarcoma or tumor and what those words meant to me. I lost it. I couldn’t even speak. He said it is very imperative that we get her to a bone dr for an official diagnosis but that he was 99% sure it was a very aggressive type of bone cancer. After 20 minutes in the restroom, I finally pulled my self together enough to walk back into the room to Schyenne. The dr followed me in and told her that he is just a general dr and not a specialist so he wanted her to go see a special dr that only works on bones. We came home and I explained to her what the dr had said to me when he pulled me out of the room. She cried. She held my hand for an hour. She promised me from that very moment sitting on the bed, that she would be strong and she would never leave me. She even said these exact words, “Momma, if I lose my leg, its ok. You won’t lose me”. How can a child be stronger than her mother!!!
That following Monday, we went in to see the Orthopedic Specialist who confirmed our fears. He noticed and has mentioned several times how impressed he was with Schyenne’s resilience. He couldn’t believe how this little girl had this huge tumor and very little pain. She is one tough girl he would always say. He explained to us how aggressive this disease was and discussed prognosis. They scheduled a biopsy, oncology appt, and many scans. Schyenne started chemotherapy just a few days later. Scans showed that the cancer had already spread to her lungs. 4 tumors. They rescanned her after her first chemo treatment, 5 tumors. She had 4 days off before heading back to have next round of chemo. Rescans showed 9 tumors. Today, 3 years and a month later, she still only has 9 tumors!! ALL GOD!! Schyenne went through 2 years of chemotherapy, limb salvage surgery, had many obstacles to over come including a major infection requiring a trip back to the OR, was in ICU for 11 days with sepsis, and many other things. At completion of her chemo regimen, her scans showed no activity in the tumors in her lungs and her tumor removed from her knee came back 100% necrosis. SHE BEAT IT!!
Some things we have learned….
Kids see things differently….
Schyennes limb salvage surgery ended up failing and caused many problems. She lived in constant pain and was unable to bend her leg more than 10 degrees. She would lose circulation in the lower part of her leg if she stood just for 5-10 minutes. Her dr told us that she was a candidate for a procedure called Rotationplasty. This is different from normal amputation. Is a simple explanation, a portion of the leg is removed and the foot is rotated 180 degrees and reattached. This allows the ankle joint to act as a natural knee. We watched videos of other children who’d had the procedure, and they could still do all of the things they’d done before. One was snowboarding and another was a Paralympic high jumper. Schyenne very casually said, “yea that’s what I want”. She sees herself as a girl who just happens to have had a rotationplasty, rather than a “rotationplasty kid”. It’s a subtle difference, but one worth noting.
Expect your lives to change….
Cancer changed everything about the way we lived our lives. To maintain a healthy home environment for Schyenne, we removed many things from her room. We didn’t allow anyone over in our home, and we stopped shaking hands and hugging the people we loved. Though our world seemed to stop turning, the rest of the world kept spinning. Tough times but they made us stronger.
Know what’s important…
Our family has always been really big on holiday traditions and celebrations before cancer, but after diagnosis, this was less of a concern for us. Don’t get me wrong, we are thankful for those things, but our day-to-day interactions with our baby girl still here to enjoy them are far more important than any one special day. I feel gratitude every single day because she is alive. That means today, I get to see all four of my children playing together, not just 3. And THAT is a big deal.