It was winter and so he wore pants--I didn't even look at his leg! But one night he was getting dressed and I could see that his knee was swollen. I sent him to school the next day, but called the pediatrician's office as soon as it opened. They got us right in, so I checked Steven out of school and took him to see the doctor. The doc took an Xray and could immediately see that he had a tumor, although he couldn't say if it was malignant or not.
I was in shock and denial. It didn't hit me that he was talking about cancer until he referred us to the oncology department at the children's hospital. That day was one of the hardest I've endured. The next day he had a biopsy and within the week he had started a nine month regimine of chemotherapy.
A few months after beginning chemo, it was time to remove the tumor. The current protacol for osteosarcoma is to do some chemo first before the surgery in order to shrink the tumor and determine if the chemo is affecting it. It is another long story, but we chose to do a procedure called Van Ness rotationplasty, where the knee would be amputated, but his foot preserved and turned backward. The result is that his foot fits in a prosthetic and his ankle works like his knee. The surgery was long, but Steven emerged without complication and recovered quickly.
He was then back on the chemotherapy and finished up his course. The biopsy results were good enough that he could do the regular dose of chemo, rather than the difficult longer arm of the therapy required when tumor response is poor.
In the meantime, his foot healed and a prosthetic leg was made for him. He had a very difficult time with his first leg and wasn't walking on his own and still using crutches.
Steven finished treatment in October of 2011. He was blessed with a whole lot of strength through those months, but by the end was in bad shape. I feared that cancer had taken away our son's sweet and optimistic personality. I think the months of continual chemo had made me forget it's draining effect. Within a few weeks, his blood counts had recouped and he was as happy as we had ever seen him. Ever since that time, he continues with an amazing attitude and cheerful disposition. The other day he described life before cancer as "dull, because now everything seems brighter."
He had his fair share of troubles after chemo. In December, he broke his femur and ended up with another surgery to reset the bone and remove the hardware that was placed in the bone to hold the two parts together. He was in an extreme amount of pain, but recovered well. As soon as he was given clearance, he had a new leg made and was walking on it immediately. In the end, he would use crutches from May of 2011 until March of 2012.
Since that day in March when he threw out his crutches, he hasn't touched them. When his leg is off, he hops or crawls around, but wears his leg whenever he can. He can run, hike, bike, swim, ski, mow lawns, and walk for and miles and nothing much stops him. He tries his best to keep up with his friends, and sometimes they have a hard time keeping up with him. His attitude inspires us every day.
The past few years have been difficult for all of us. In November of 2012, our fifth baby was stillborn (a boy--Daniel) the week before I was scheduled to deliver. In May of 2015, my younger sister, Alisa, passed away from melanoma. It has been five years since Steven's diagnosis and he continues to thrive. Although it is unlikely at this point, we still are up against the fear that his cancer could return someday. The way that we have gotten through it all is our faith in our Savior, Jesus Christ and by the people who surround us and have supported us through it all.
UPDATE: February 16th, 2024
Steven is now 22 years old and blowing us all away with his enthusiasm for life and ability to adapt and thrive. He was called on an LDS mission to the Baltics, speaking Russian, but it was 2020 and he was assigned to serve in Houston Texas for a while. After 6 months there, he was able to serve in Lithuania and his mission call was changed so that he spoke Lithuanian. He finished his mission and the only medical event was once where his hearing aide dome became lodged in his ear and they needed to pull it out. Both his prosthetic legs held up beautifully. He is home now and studying Russian and Physics at BYU. He continues to ski and play ultimate frisbee and lead a very happy, normal life, free of pain and fear of cancer. We continue to be grateful for all the help and support we have received through the years.
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