By Cynthia Richardson
My son, Eric, is a survivor of a brainstem tumor. I share my story to tell you that there is hope in battling this terrible disease.
Eric, my first born son was diagnosed with a brainstem tumor at age two. At age twenty months he began losing weight, could not chew food easily, developed numerous ear infections, suffered from chronic bronchitis, and vomiting. His muscles became weaker and he could not hold his head without it tilting.
Eric’s health continued to decline and my husband and I could not comprehend what was going on. There were trips to the doctor’s and emergency rooms, but no one seemed to know what was happening. In desperation and needing to do something to help my child, I took Eric to a physical therapist, who examined Eric and noticed muscle weakness and identified delayed gross and fine motor skills.
Very concerned we were referred to Dr. Barbara Koch a physiatrist at Children’s National Medical Center (CNMC). The next week I scheduled an appointment at CNMC’s outpatient clinic in Fairfax, VA. Dr. Koch was wonderful, she examined Eric thoroughly and voiced serious concerns about his symptoms. A Computerized Axial Tomography (CT/CAT scan) was ordered.
The CT scan took place on December 16, 1992. It was a day I will never forget! Everything seemed to be going well and the staff in the radiology department were kind and caring. During the scan the radiologist asked me to pick up the telephone. I was told to go immediately to CNMC to see a pediatric neurosurgeon. When I asked Dr. Koch to explain what was going on and what the CT scan revealed, the room became deadly silent. Frantically I called my husband, picked up my son and drove home. Driving in a daze and wondering what was going on I finally made it home. My husband asked a million questions I could not answer. We immediately drove to CNMC and met with Dr. Chadduck who gave us the devastating news.
Our precious baby had a brainstem tumor, a very large tumor about the size of a baseball. It was incomprehensible that this huge mass was growing in his tiny little head. My husband took a deep breath and asked, “how can we get rid of this tumor and what is the next step?” He explained how serious the condition was and that Eric first needed a Magnetic Resonance Imaging (MRI) to get better look at the tumor.
Speechless, I felt like someone had ripped out my heart. It was a dreadful drive home. I could not stop crying. My husband tried to comfort me and I was amazed at his strength. He said, “Eric will be fine, he is in God’s hands.” That night we cradled Eric in our arms and asked God for strength, guidance and for Eric to be well again. There was a moment of calmness among us and we knew Eric was going to be fine. As I began calling our family and friends to let them know about Eric’s prognosis, we received tremendous support from everyone.
The next afternoon Eric’s MRI revealed a tumor in the lower portion of the brainstem growing within the spinal cord. Eric’s surgery was scheduled for the following Wednesday, December 23, 1992. Dr. Chadduck was very kind and caring, but explained how critical the surgery was going to be. There were serious risks with this type of surgery, such as paralysis and death. He needed to remove as much tumor as possible without causing nerve damage. Dr. Roger J. Packer, another wonderful and caring doctor, explained the possibility of Eric’s tumor being cancerous. This was the furthest thing from our mind. To think this tumor can be cancer was another tear in my heart. My husband and I held hands and that sense of calmness came among us again.
The surgery was scheduled on December 23, 1992. We did not get much sleep the night before and we were flooded with telephone calls from concerned family and friends, giving us much needed support. Arriving at the hospital about 7:00 a.m. they began preparing our son for surgery. We waited anxiously through the surgery that took almost five hours. Dr. Chadduck came out with the most wonderful news. The surgery went well and Eric was doing fine. He was able to remove 90% of the tumor. The pathology report concluded the tumor was a low-grade glioma.
We are so thankful to God for this wonderful blessing and for the skilled doctors who worked to save Eric’s life. Eric spent one day in the Pediatric Intensive Care Unit (PICU) and eight days in the hospital. From then on Eric made an unbelievable recovery. He began to regain his strength again. What a fighter he was! He attended preschool three months after surgery and worked with some fantastic teachers and therapists.
Eric is ten-years-old now and in the 5th grade. During the past eight years he showed no signs of tumor growth until December 2000. Then in a scary moment he began complaining of double vision and headaches. As we hoped and prayed the tumor was not growing again, we saw the doctors. The MRI revealed a cyst in the brainstem next to the tumor that had also started growing back.
Dr. Packer suggested radiation therapy and Dr. Philip Cogen, a wonderful neurosurgeon, removed Eric’s cyst on January 9, 2001. A shunt like tube was placed in the brainstem to drain fluid. Eric has just completed radiation therapy at George Washington University Hospital. He is doing extremely well and the prognosis looks excellent, though he still has numerous problems that are residuals of the brainstem tumor. A paralyzed left vocal cord often causes chronic aspiration pneumonia and the need for hospitalization. The third time he almost died. Eric has gastrointestinal (GI) reflux, sleep apnea and asthma.
Through it all nothing seems to stop Eric from achieving his goals. He is strong minded and confident. He has a yellow belt in karate and loves to play sports. Eric is a champion at video games, none of his friends can beat him.
I hope that by sharing our story this will inspire and give hope to children and their families plagued by this terrible disease. I am encouraging friends to donate to the Childhood Brain Tumor Foundation so that a cure can be found for this devastating disease.
Written by Cynthia Richardson
