My Name Is Chip Madren

Community, Treatment, Research

A brief history of Chip’s last five years…..

In August 2010, Chip was regular 13 year old 7th grader who loved baseball, hunting and fishing. After what we thought was a mild concussion, he was diagnosed with Stage IV anaplastic metastatic medulloblastoma (brain cancer). He was immediately admitted to Children’s Healthcare of Atlanta where he spent about 180 days of the next year. He received 48 radiation treatments, 10 surgeries, 2 shunts and a g/j tube, 18 months of chemotherapy, and countless other pokes, prods and procedures. He was mute and could not swallow for over 10 months. Over the next 4 years Chip has endured hundreds of PT/OT/ST sessions, swallow therapy, injections, MRI’s and CT scans, follow-ups with a dozen specialists……..the list goes on. Chip has made great progress, but there is still a lot to do.

See, the thing about brain cancer is that once you survive the grueling cancer treatments that you may or may not survive, you then have to figure out how to live with a brain injury as well. We HAVE to find better treatments.

Currently Chip is 19 years old and lives at home with his two teenage brothers, his parents and his service dog, Vera. Chip is visually impaired, hearing impaired and spends his time in a wheelchair. He works hard every day to accomplish the simplest of tasks that most people do without thinking. He enjoys hanging with his brothers, working in his garden, cooking on his green egg and planning his next hunting or fishing excursion. His attitude is amazing and inspiring.

Since March of 2015, Chip has been attending a program at CHOA in the Center for Advanced Technology and Robotics. Chip has been a patient at Shepherd Spinal Center and CHOA. In 2013, we took Chip to Chicago for an intense PT program for 8 weeks. Chip goes to CHOA almost every day and works to exhaustion. His goal is to walk, at least in the house and other short distances…..to have some independence. Stay tuned….Chip will amaze you!

Hear It From Chip Himself

My name is Chip Madren. Along with my Mom and Dad, Lea and Ken, I have two brothers, Jack (17), and Bret (16) and two dogs. Without much previous drama, on August 17th, 2010, my pediatrician ordered an MRI for what I thought was a concussion.   My Mom and Dad picked me up from school, took me to the appointment, and our lives went from zero to sixty in about 2.2 seconds that day. We were immediately sent to Children’s Healthcare of Atlanta at Scottish Rite (CHOA), where in 72 hours, I had two brain surgeries, MRI, and CT scans, followed by 14 days in PICU, and several more months inpatient. I was diagnosed with Metastatic (spreading) Anaplastic (aggressive) Medulloblastoma (brain cancer). Go ahead, read between the lines. I was in school that morning. Suddenly, words I had never heard defined our lives and people I had never met were the most important people on earth.

My diagnosis is bad. Really bad. There is no other way to put it into words. As a side effect of the main tumor resection, I also suffer from a rare complication called Posterior Fossa Syndrome. This syndrome has left me completely debilitated. I have spent the last year attempting to relearn everything – from holding up my head, talking, swallowing, eating, sitting, walking, using my hands – everything. I have some hearing loss and significant vision loss. Currently, I work through several therapy sessions a week to regain my function. I am making progress, but the road is still very ominous. I am still completely dependent on my parents for EVERYTHING. I work every day at a rigorous rehab program where I plan to regain my life.

On the cancer front, I underwent six weeks of cranial and spinal radiation and chemotherapy with 38 round trip ambulance rides from CHOA to Emory. Next, came six months of intense Chemotherapy at CHOA with multiple admissions for infections, including another stay in the PICU. I have had several surgeries to place G-J feeding tubes, two shunts and two shunt revisions, and crumbling teeth. Over nine months, I spent over 130 nights at CHOA. Fortunately, we live just a few miles from the hospital and could scoot home more than most! I was able to spend the entire summer at home. I will have MRI’s every three months for the next several years to monitor the tumors.

With all of this being said, our family considers ourselves extremely blessed. From the first hour of our crisis, our community has completely surrounded us. Immediately, schedules were in place to handle everything peripheral in our lives so that my parents could focus on me. My two brothers were driven to school each day, helped with homework, sports uniforms cleaned. My pantry was stocked, meals delivered, laundry folded, toilets scrubbed, grass mowed, and even beds made so tight Bret found it hard to climb in at night! The Heavens were stormed with prayers of all types. There were Rosary groups, candles lit, little children’s bedtime prayers – Christian, Jewish, it didn’t matter. Everyone fell to their knees for me. I will be forever grateful.

The people surrounding and supporting my family have been our lifeline. The term “lifeline” is not one I use loosely. This support has saved all of our lives. Jack and Bret have not missed a baseball game or a birthday party. Dad’s friends supply the running seasonal hunting or fishing reports. My Mom’s friends run my errands and visit frequently to chat. Both of our families are of course helpful as well, they have to be. It’s the friends who could have easily moved on with their own busy lives, but instead have chosen to stick around that I am so thankful.

Before I got sick, I was a normal 13 Year old kid. I played on my school’s baseball team, goofed off with friends, and loved anything to do with the outdoors. My main passion revolves around anything to do with hunting and fishing…..any kind of hunting and any kind of fishing! My favorite color is Camouflage!!! I am determined to get walking again soon so I can get back in the woods. My Dad and I have always been partners in this passion.

On November 30, 2011, I officially completed my chemotherapy and am considered “off-treatment” and my June 2016 MRI scans are clear. As for now, I work hard every day at my Rehab and at home at gaining back my strength, coordination, walking, balance, speech, vision, and eating. Everything has to be relearned. I try not to get discouraged. This is where I am thankful for my brothers, Mom and Dad, and friends.

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