Trying to explain rotationplasty is difficult. It’s easier to show you than to tell you. Check out this link Bailey on “The Doctors” Bailey was around the same age as Lyris when she had her rotationplasty surgery. She is now a teenager in high school. We had a chance to meet Bailey, her mom Tiffany and siblings a few weeks ago. They have been wonderful in providing support and giving us a birds eye view in what to expect. They are the reason all of our worry and concerns have diminished. You guys ROCK!! Thank you so much!
Lyris will finally be able to be a kid again.
It’s funny how things happen. July 19, 2012 Lyris was just 6 years old and had her very first surgery to remove the tumor from her right femur. Who would have known 5 years later July 20, 2017 Lyris would be having her lower leg REMOVED by a process called Rotationplasty.
You think because the chemo is finished, the hair has grown back and the cancer is gone, life is GREAT! Welllllll, life IS great because we are alive and kicking. However, it’s emotionally draining on the entire family when we have to keep going in/out for surgeries. It’s especially hard on Lyris when she is unable to simply be a kid. Lyris right leg is shorter than her left, so she walks with a limp and has multiple shoe lifts. Lyris can’t run and jump. Lyris used to LOVE to roller skate, she can’t right now. Lyris has a bike, but she can’t ride it because she can’t bend her knee. Lyris can’t go to bounce houses and trampoline parks. WHY? Her knee doesn’t work and if she jumps her leg will break AGAIN. (We tried it once and that’s when we went in for another surgery last year in March) Everytime you have a surgery their are risks. Last year Lyris ended up with a staph infection after surgery.
People always say, “If I had known then what I know now” I would have done things differently. Honestly, in this situation, I think we would have done the same thing. When you hear the word “amputation” you automatically gasp and your in a state of shock. The first thing you ask about is other options. We tried the other options, they failed.
By the way, you just said Lyris name about 10 times. Please keep saying her name and lifting her up in prayer. Thank You!!
The blog has been neglected. Since the last post, I had to do some major work on ME. I had not had an opportunity to take care of me. Some time as parents we feel guilty when we do something for ourselves. At some point, you have to make sure your “good” so you can be “good” for those that need you the most. I had the worst breakdown I’ve had since this journey began and my health began to be affected. STRESS WILL KILL YOU! I got it together now (for the most part).
The past few weeks has been a roller coaster. Lyris has had a couple of fevers which has caused her to be in the hospital a lot more than normal. The second fever was caused by an infection in her line. Everyone in the house has been sick. The children at the kids school have been sick. Lyris got a third fever (out of nowhere) when it was time for her to come home. She ended up having to stay the night. They never gave her any medicine for the fever. The fever went away within an hour and never came back??? We’re calling this fever a mystery?? Lyris has been sick a lot more than normal.
Lyris had been doing sooooo well!! We are so close to completing treatment, but for some reason, things are getting more difficult. Because of the infection, Lyris chemo completion date is behind a week and we will be in the hospital for Thanksgiving.
We are staying prayerful!!