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Tayler's Story

In January Tayler started having severe jaw pain, and after consulting her oncologist, an MRI was conducted. They located a malignant tumor in her jaw, and have determined it's a bone cancer called osteosarcoma. They believe the tumor is a result of the intense radiation treatments she had to undergo to beat the brain tumor in 2008. Though they believe the tumor is isolated, it is very serious, and her team of doctors at Children's Hospital immediately went to work devising a treatment plan. Last Wednesday, Tayler underwent a 13-hour surgery removing the half of her jaw bone containing the tumor, which they replaced with a portion of the fibula bone from her right leg. She spent 2 nights in ICU before being moved to a regular room in Children's Hospital where she is still recovering. Once she is moderately healed from this surgery, her doctors want to immediately begin a chemotherapy regimen. The regimen will be on a 6-week repeating schedule, which will include both in-patient chemo treatments, blood transfusions, and rest weeks. These treatments will continue for 9-12 MONTHS!!

Surgery 1

On January 31st, Tayler underwent surgery to remove the osteosarcoma tumor to include the portion of her jaw where the tumor was originating. In addition to removing the tumor, they cleared an area around the tumor where they knew more cancer cells will exist. The goal is to not have any cancer cells present in the outer edge of what they remove.

The surgeons had to make a fairly long incision from her right ear down along a natural crease of her neck to about the center of her throat so they could peel her face back to perform the surgery on her jaw. Since her jaw bone (mandible) was being removed, the doctors reconstructed her jaw using the fibula from her right leg, connecting the bone to the remaining jaw with a titanium plate. They also used tissue and blood vessels from her leg to rebuild everything they had to remove. The surgery leaves a small section of fibula near the knee and another small section near the ankle. This is to prevent damaging the joints. The fibula will not be replaced with anything and will be left as is for the rest of life. As the surgeon put it – The fibula is like your appendix. You don't need it and you don't know it's there unless something is wrong with it. Tayler now has only one bone in her lower right leg instead of two.

The surgery also required Tayler to have a skin graft on her leg that is about 6 inches long and 2 inches wide. The skin graft was necessary because the tissue under the graft on her leg was taken out to fill in the tissue that was removed from her face because it likely was riddled with cancer.

The surgery lasted a little over 13 hours. Tayler went from surgery to the PICU where she stayed for two additional days. The doctors anticipated Tayler would be in the hospital for a total of 14 days. Tayler being so amazing, rocked the surgery and the recovery and was able to go home after 9 days.

Her neck, jaw, and leg continue to heal. The nerves on the right side of her face were damaged which was likely to happen during surgery. These nerves control the muscle movement on the right side of her face, meaning she does not have any movement on the right side of her face for the time being. These should regenerate over time. We've been told that it could take several months and to be patient. It's hard to have patience. We just want to see her be able to fully smile.

Surgery 2
We received a phone call from the oncologist on February 13th letting us know that they found more cancer cells in the edge of what they removed. That meant that there were also more cancer cells in the jaw bone that they had not removed. The course of action to give Tayler the best possible chance at beating this was to have a second surgery to remove more of her jaw bone.

On February 20th, Tayler underwent surgery. Just under an inch of additional bone was removed during this surgery. They made the decision during the surgery to not replace the removed bone and instead leave a gap between the recently reconstructed fibula bone and the natural jaw bone. The titanium plate is still intact and currently covering the gap on bone. Leaving only the plate with no bone, will at some point give out. It could tweak and it will cause pain. The surgeons will have to go back into her jaw in the future and replace the bone. There were many reasons that they didn't replace the bone right now and ultimately we trust it was the right decision.

Tayler's surgery lasted 6 hours. Her hospital stay was only 2 days and she's been home ever since recovering. She's still recovering from surgery. Her skin graft is healing well and she's starting to walk again but has some work to do on the flexibility of her ankle. She still doesn't have any movement on the right side of her face. The second surgery likely reset the clock as far as when the nerves in her face will regenerate.

Provided everything continues to heal as it should, Tayler will likely be cleared to start chemo on March 12th.

We'll continue to add to this page as we go through this journey with Tayler. We appreciate all your prayers, thoughts, love, and support. Please keep praying for Tayler's continued healing from surgery, fully nerve regeneration for her face, and for effective chemo with manageable side effects.

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