Hunter Hepler is a 14 year old stellar athlete, brother, nephew and son. Hunter loves hunting, fishing, and country music. He was diagnosed with brain cancer after suffering from debilitating headaches. Hunter underwent surgery, spent 8 weeks in Chicago receiving proton radiation therapy and chemo.
Hunter faces 10 more months of chemotherapy which requires weekly trips to the American Family Children’s Hospital in Madison, Wisconsin some of which are inpatient treatments. Hunter and his family are from Missouri but made Wisconsin their new home a little over a year ago.
On April 30th Hunter began his 6th round of chemotherapy. With the encouragement, prayers and support of his family, friends and nurses/doctors, Hunter continues to be a fighter.
From Jamie Grace: Before being diagnosed with Tourette Syndrome, my mom and I spent most of our time, over the span of two years, in the primary doctor’s and neurologist’s offices. I was misdiagnosed multiple times, was given different medications to “try”… it wasn’t a pleasant experience yet my mom and dad never gave up. Hunter’s road to finding an answer has some similarities of mine and I was so inspired by his mom’s diligence in pursuing the real answers to get Hunter the real treatment he needed. About 8 months into their journey, Hunter’s a mom, who also happens to be a nurse, found out the actual diagnosis. Their family is currently still on their medical journey and Hunter continues to fight.
In May 2013, Hunter began getting the headaches more frequently and they became debilitating. His attendance at school was becoming an issue. One day I got word of a conversation that took place between Hunter and another student which involved Hunter stating that ’Everyone would be better off if he was dead’. My heart was broken. I’m a fix-it person. What could I do to fix this? Why was he thinking this? What were we doing wrong???
One May morning, I found Hunter lying on his bed in tears when I went to wake him up for school. ‘My head hurts so bad and I can hardly move’…. I figured this was an attempt to get out of school that day…typical teenage stuff. I soon realized that this was far more. We loaded up in the car and headed to the ER.
…No, I don’t have vision disturbances until after I get a headache.
….No, I don’t feel nauseated.
….No, I’m not sensitive to light or sound
– all the typical migraine headache related questions.
I pleaded (once again) with the ER doctor to do a scan of Hunter’s head. I explained the events of the last several months- the weight loss, headaches, back pain, inconclusive blood work. His response- ”True and True but unrelated” …. I can confidently quote those words because they are some of the few things I will never forget. Once again, my concerns are dismissed and we were sent away with more prescriptions, an opinion that maybe his primary doctor should get images, and no real answers. We followed up (as suggested) with Hunter’s pediatrician a few days later after the meds did not work and the headaches continued to worsen. She asked the same questions, did the same exam, denied the need for imaging, and gave us yet another prescription for expensive migraine meds. A few days later, after continuing to watch my child suffer severe, debilitating headaches and cry in pain, I gave an unfriendly call to the doctors office and insisted that an MRI be done on Hunter’s brain immediately.
It was the end of the school year. The end of Hunter’s 8th grade year…the end of middle school. Despite not feeling well, Hunter was excited about the upcoming graduation night. He and his classmates were about to celebrate the turning of a page… a new adventure… high school!
The rainy morning of June 5, 2013, was fairly routine… the girls were rushing around for their last day of school and Hunter was talking about how he wanted to hurry up at his appointment so he wouldn’t have to miss the entire last day. As we headed to the doctors office for his MRI, we chatted about what he would wear to graduation, whether or not we would need to do some shopping, and what he wanted for lunch since he hadn’t eaten breakfast.
I sat in the waiting room surrounded by lots of people, patiently (as patiently as I could) waiting for Hunter to come out, “Mrs. High, I need you to come with me please…we need to do another scan with contrast dye…We’d like you to wait back here”… My heart sank. I’m a nurse. They saw something and they need to see it better. As I try not to let my mind wonder, my eyes started to fill up with tears. The tech came out with Hunter and sat him next to me. She told me that the doctor wanted to see us immediately ..and takes us to an exam room. I wiped my eyes and started joking with Hunter about how long doctors visits are and how hungry he must be. Then the doctor walked in…
I can’t begin to describe the look of devastation on Hunter’s doctor’s face as she opened the door. I knew right then and there that it was bad. Truth be known, I had known for 9 months that it was bad….maybe longer. I finally got it, an answer…. ‘Hunter has a brain tumor’….
….tears…Lots and lots of tears….
Hunter and his favorite nurse- Ellie
Hunter had a golf ball sized tumor in his brain that was causing his heart rate to drop down into the 40’s. They needed to act fast. Calls were made and Hunter was taken by ambulance to the Children’s hospital to be evaluated by a neurosurgeon…. where he was later diagnosed with brain cancer. He never made that 8th grade graduation.
I left that morning with plans… never in my wildest dreams (or nightmares) would I be hearing a doctor tell me my 14 year old son has a cancerous brain tumor, being rushed 2 hours by ambulance for a drain to be put in my childs head, spend the longest day of my life waiting for him to get out of surgery, watch him lay there unable to open his eyes or speak to me, and spend 21 days away from home in a hospital.
My highly functioning, intelligent, strong, athletic son was having to learn to walk, talk, and process simple things. In one day, everything- my hopes, dreams, plans… came to a very quick halt. There was a whole lot of tears, yelling at God, silence, and uncertainty during those early days of Hunter’s diagnosis. There still are now from time to time. We learned to pray harder than we ever had before.
I question things a lot. Life hurts. It is full of disappointments and pain. It is also full of Hope, laughter, and promise. Life is all about the way we chose to view it. Nothing is guaranteed. There are going to be ups and downs and lots of in-betweens. I thank God every day for my son and his continued fight. He teaches me something every day. His persistence is unlike that of anyone I’ve known. There are days when this story makes me angry.
When all is said and done, I pray that we can look back at this journey and say that we made the best with what we had and we NEVER EVER GAVE UP!