Help give children with brain tumors a better chance

Kosta’s father was able to capture his son’s first smile after surgery.

Kosta Christos was treated for a brain tumor at Advocate Children’s Hospital. This is his story as told by his father, a grateful parent who’s raising funds for pediatric brain tumor research.

When our vivacious and smiley 14-month-old son, Kosta, began vomiting unexpectedly, we were of course concerned but we also didn’t want to overreact. We took Kosta to a pediatrician who, based on his symptoms, understandably diagnosed him with a stomach bug. We picked up the usual medications and headed home, expecting to see Kosta bounce back to his normal self.

Unfortunately, Kosta’s symptoms worsened the following day. Instinctively, we headed to the emergency department at Advocate Children’s Hospital – Park Ridge. After a quick examination and a few questions, the ER team ordered a CAT scan, ostensibly just to rule out anything extreme.

No less than 30 minutes after walking in, our son was diagnosed with a brain tumor. Lauren and I were stunned … terrified … numb.

Thankfully, the exceptional staff had caught and properly diagnosed Kosta’s condition right away. We were transferred to the pediatric intensive care unit (PICU) and as we walked through those doors, a harsh reality settled in: This was not some bad dream. This was real. Our baby boy’s future hung in the balance.

We were immediately introduced to one of the pediatric neurosurgeons, Dr. Bryan Bertoglio. He let us know surgery was already scheduled the following day and that he would be pairing with Dr. John Ruge to remove a tangerine-sized brain tumor blocking Kosta’s left ventricle that produces spinal fluid.

The surgery went as planned. Post-op MRI results indicated that the team was able to fully remove the brain tumor. Biopsy results came back benign. We were cleared to go home well ahead of plan.

We exhaled, if only for a moment, and began to reflect on our good fortune.

Dr. Ruge and his team were simply extraordinary. Communication between the Child Life team, the nurses and doctors was flawless. Throughout our ordeal, though seemingly unbearable at times, Lauren and I felt we were cared for like family.

Paying it forward

The truth is we were very fortunate under very unfortunate circumstances. We are so thankful for the support of amazing family and friends. We are so grateful to the world-class medical team led by Dr. Ruge. We are unbelievably thankful that our little guy is healing so quickly, bringing smiles and joy to everyone he meets.

We learned during recovery that we can help more families like ours through a brain tumor research study involving a medicine called 5-ALA.

5-ALA is a prescribed medication that brain tumor patients take before surgery. It illuminates the brain tumor under special lighting. This allows neurosurgeons to visually differentiate brain tissue from tumor tissue which gives them a better chance of removing the brain tumor. 5-ALA is approved for adults and is in the research phase for pediatrics.

Given our good fortune, Lauren and I are committed to helping talented surgeons like ours leverage every advantage possible. We’ve already donated what we can and ask that you might help too. Please consider making a gift today.

John Ruge, MD, FAANS, is the Chairman, Department of Neurosurgery at Advocate Lutheran General Hospital. He founded the Children’s Brain Tumor Center at Advocate Children’s Hospital in 1997. The Children’s Brain Tumor Center provides a multi-disciplinary approach to discuss the best, holistic care plans for individual children. This holistic approach to delivering comprehensive information and encouraging parental input is one of the reasons it has gained a reputation for compassionate and expert care that draws families from all over the Midwest.