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James (Gus) Siggs (2008-2016)

gus

On October 1st of 2012, doctors found a tumor in Gus’s brain. On October 5th, they took it out.

He was three years old.

It took less than a month for us to figure it out; one doctor visit, one trip to urgent care, a matter of hours on a Monday morning with multiple doctors demanding an emergency MRI. Nothing about our journey has been the typical story you so often hear about childhood cancer – but then, nothing about James Chance Siggs has ever been typical.

Gus has been Gus since he was a newborn, wriggling his way up under my chin so often, I called him my Snuggleupagus. It stuck, and was the first thing he ever learned to write. He was so self-aware and articulate at three years old he was able to tell us exactly where the pain was, what it felt like, and demand to see the doctor. He told his surgeon to be careful during the surgery, his bones are fragile. And when he woke from the five-hour long surgery, with a five-inch incision in the back of his head, he said, “I have to pee. Where’s my crane? I WANT TO GO HOME.” And then he tried to pull his IVs out. They discharged him five days later.

We spent six months surviving a fast paced, very aggressive treatment plan; he turned four during two months of radiation, his brother Charlie turned three the day before Gus started chemotherapy. In May he was discharged from treatment months ahead of schedule, his body recovered so fast. As suddenly as it began…it was over. For the next two years we lived in the kind of peace that only comes from clean scans and healthy, growing children who are thriving in pre-school and kindergarten. The hope that the terror was behind us, for good.

On May 13th of 2015, it all came crashing down. Two new tumors in his head, and a metastatic tumor in his spine. From June 2nd to December 18th, Gus endured three surgeries: five tumors removed from the bottom of his spine to the base of his skull. Forty-three days of radiation. He carried seven scars on his seven-year-old body.

He taught three separate classes of his six-and-seven-year-old peers about brain tumors, surgery, and the various implants we have used to inject him with life-saving drugs. He showed them his scars, explained what they were for, and let them feel the bump from his subdermal port so they would know where not to be too rough with him. He suffered no neurological damage, and continued to grow at a normal pace. He bounced and ran and sang and fought with his brother. He missed school every Thursday in order to go to the hospital for experimental immunotherapy that was our only hope of saving him.

June 27th of 2016, our worst fears were confirmed. It was too aggressive, too fast growing. And it was everywhere in his brain and spine. There were no options left.

He was strong and outwardly healthy until the very end, pain his only nemesis. He continued to jump on the trampoline even once he started IV pain medication. But on September 29 the tumors took their toll, and Gus returned to stardust two days shy of the fourth anniversary of his original diagnoses.

“My tumors are kind of like Indominus Rex,” he’d said. “We just need a Mosasaur to fight them.”

We donated those dozens of fatal tumors to Dr. Foreman so that he can use them to save others and Gus can be the Mosasaur.

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