They say the best place to start any story is at the beginning, so I am going to do just that here. My daughter, Emily, is 18 years old. Two years ago, she began having headaches and her father noticed her tongue seemed "thick". After taking her to the doctor, a CT was done, which started us on an incredible journey.
Emily has a rare form of bone cancer called clival chordoma. By rare, I mean Emily's cancer type is literally one in a million. Emily, being the kind of person she is, immediately named her tumor "Clive". Our motto during those first few horrible weeks was "No Clive Left Alive", because our goal was to get this squatting toad of a monster out of her body and into remission as soon as possible. To that end, Emily underwent 16 hours of surgery at Nationwide Children's Hospital in Columbus Ohio, followed by 42 proton beam/photon radiation treatments in Boston, Massachusetts. We had remission for two years, confirmed by an MRI every 3 months, then every 6 months, then finally, every year. We were scheduled for one on October 24, 2018. However, "Clive" had other plans.
I was driving her to school last Tuesday and had stopped for gas. It was a typical school day. She had awakened with a slight headache and I thought her speech seemed a little off. She walked to the gas station to ask them to put on the pump and to get herself something to drink. She was walking back and stopped. Something in the way she looked at me made me stop the gas pump and start walking toward her. Before I got there, she grabbed her head and started crying and then had a seizure. I got to her just in time to catch her as she stumbled and fell. I don't know where I got the strength to do so, but I picked up my 177-pound daughter and put her in my car and raced to the nearest hospital (Rex). After most of the morning there, including an MRI, we were transferred to Duke University Cancer Center in Durham. Our oldest daughter, Molly, joined us there. Dr. Patrick Codd came into our exam room and told us that the tumor was back. Five words and our world has been shattered.
"There appears to be recurrence." We all felt like the bottom had dropped out of our worlds. He went on to say that the tumor has involved the first cervical vertebra (at that point) and he would be admitting us to the hospital for further testing. We didn't even get time to go home and pack a bag. Before even leaving his office, Emily was placed back into a cervical collar. The last time she wore one was 2 years ago. She wore it for 8 months the first time. Then it was off to the hospital. We spent three days there, testing...another MRI, a CT of her head and spine, and blood work. And the waiting......whoever told you waiting was the easy part is wrong. Dead wrong. Because when you have time to wait, your mind takes you down all the paths you don't want to go down. I thought about all the things she went through the last time. The nausea, the weight loss, the pain, needle sticks, fruitless searches for IV sites....all of it. This time was no different. Three different nurses all trying to find a place for an IV site.
The third morning, the doctor and his team finally came in. “The tumor is worse than we thought.” All the testing has revealed that the tumor involves more bone than we originally thought. The easiest way I can explain it is this: the skull sits on a pair of small bones called condyles. They allow the skull to move back and forth when you nod your head or look up. It then rests on your cervical (neck) vertebra. Emily’s tumor has invaded both condyles and her 1st and 2nd cervical vertebrae. There is also suspicion of tumor in her 3rd cervical vertebra.
This is not the news we were expecting. It’s worse, much worse. There is no longer a “he” will remove the tumor, there is a “the two teams” will work on removing tumor and then stabilizing her skull. This will be challenging depending on how much bone is lost. After surgery there will be more radiation and likely chemo this time. He asked for the weekend to work on a plan for treatment, which we will find out next week. They don't want to wait on surgery. It's too risky to wait. Time waited means bone lost.
Our journey has started all over again. I decided to make this website as a way to keep up with all the family out of town and friends who would like updates on Emily's journey. I will update it when we have news and daily while she is in the hospital. I can't promise it will always be cheerful or happy.
If you're one to pray, please pray for a miracle. We're going to need one.