facility in this story

Harper University Hospital

Detroit, MI

My story starts with answered prayers the day Jackson, our son, was given the green light to reclaim his childhood after an illness that led to surgery and over a week in the hospital.

“Don’t take my little guy" I prayed - "If you need someone, I am right here.”

Little did I know that the prayers recited daily by Jackson's bedside would be heard so clearly. In February 2006, shortly after Jackson came home, I kept getting this dizzy feeling - like I was on a tilt-a-whirl. But this tilt-a whirl was unlike the classic carnival ride. I spoke to doctors and was assured everything was okay. If it were something serious, there would be other symptoms. Still, the dizziness continued.

One day, after collapsing to the ground while out for a jog (completely abnormal as I'm a former college athlete) I immediately sought medical attention to find out what was going on. I was just running along and the next thing I knew I was flat on my back. I called the doctor and said, "Please do an MRI - something is not right.”

Despite my doctor repeatedly saying that everything was okay and I was “remarkably asymptomatic,” I was right. Something was terribly wrong.

Was it coincident? I don't believe so. It was the exact day of Jackson’s follow-up appointment. He got the green light, no restrictions. He was good to go. While driving home, I received a call from my family doctor. He said to come in to discuss the MRI I had the night before. And so my journey began.

I was told, with Jackson sitting on my lap, that a tumor had been growing smack dab in the middle of my brain. Then I heard the words, I'm so sorry, it is likely inoperable because of its location. Surgery would be too risky.

With that, my family was introduced to Teddy.

I, along with my husband, Paul, decided to name the tumor to simplify conversation and keep the kids, who at the time were one-and-a-half and four years old, in the loop and less scared about what was happening. When we were talking about the tumor all the time it just wasn’t working. That is such a scary word and we needed something nicer, after all - he appeared to be benign and this was a blessing. Teddy seemed fitting.

A week later I met with a surgeon at Detroit Medical Center, Dr. Murali Guthikonda. He was willing to try a new approach to removing complex tumors of the skull base. It was my only chance of seeing Jackson and Lauren grow up. A month later I underwent a long, complicated surgery that resulted in two weeks of neuro-intensive care then a stint of rehabilitation which left me wearing an eye patch and using a walker. But, I was alive and Teddy was gone. Or so I thought. Chordoma, Teddy's official name, have a high tendency of regrowth.

My mantra became, “If Teddy hasn’t grown, you’re going to leave me alone.”

Sadly, that was not the case. When Teddy began growing again, Dr. Guthikonda suggested a second surgery (transpenoidal resection) followed by proton beam therapy. With everything we'd already been through, I thought – ‘why not?’ This has to be easier than my first surgery.

“Let’s be done with Teddy forever,” the entire family agreed.

Post-surgery, our family packed up the car and drove the 380 miles from Freeland, Mich. to Bloomington, Ind. to the IU Health Proton Therapy Center. In my initial consultation with Dr. Mark McDonald, I made sure to ask about more than the treatment. Could they do the treatment over the summer when Paul, a teacher, and the children were out of school? I just couldn't bear being away from them for ten+ weeks - Teddy had kept me away from them long enough. The team at IU Health Proton Center were incredibly accommodating and said, yes! And so we started, together, the daily treatments, five days a week over the summer 2011.

Bloomington, IU was a great place to be "stuck" for the summer. Having two college athletes as parents - our kids don’t spend much time sitting and for Lauren and Jackson - then six and nine years old - it was heavenly! They had access to basketball courts, tennis, golfing, a swimming pool and Lake Monroe. Thankfully the Proton Beam left me with minimal side-effects and we were able to turn the summer into a ‘radiation vacation’ and perhaps the best summer our family has ever had.

Today, I am back to work, feeling great and consider it my purpose to tell others about Dr. Guthikonda and the benefits of Proton Beam Radiation. Thanks to Dr. Guthikonda, who was willing to try a risky surgery on me and didn’t let me give up on removing Teddy forever, I am here to enjoy our children and am grateful for the gift of time that he, my incredible family, and faith have given me.

These submissions are individual opinions of patients based upon their own experiences. By submitting a story about a provider, you are acknowledging that you or a family member was or has been a patient of the provider. Once submitted, stories will be displayed publicly on our website. Since stories are individual opinions of patients, they should not be considered medical advice.

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