Cohen’s Brain Tumor Story
My son, Cohen, started having severe headaches two years ago. My husband and I took him to see a Neurologist. Sadly and with numerous opinions, we were sent home with more questions than when we started. The doctors refused to do imaging to find out why, my 10 year old was having these episodes. In September 2019, the nurse called and informed me, Cohen had fainted while walking back from a pep rally. The nurse monitored him closely and assured me, he was feeling better and was not necessary for him to leave school. My husband and I assumed it was due to the September heat, as the pep rally was outside. Fast-forward to January 2020, he was sent home from school sick. Assuming he had the flu as do a lot of kids were out of school sick. I took Cohen to urgent care and it was confirmed it was in fact flu type B. Nine days later, Cohen was becoming more sick. His fever became worse, refusing to eat or drink, so we took him back to Urgent Care. We were notified, while at the hospital, Cohen now had both flu type A and B. While in the ER he had his first seizure. The emergency doctor said it was most likely a febrile seizure (A febrile seizure is a convulsion in a child caused by a spike in body temperature, often from an infection). However, at the time of the seizure his temperature was 99.8. The ER doctor briefed, he was stable and was able to return back to school three days later. The first day back to school, I was notified by the school nurse, that he had fainted again. His lips were blue and his body was white. I picked him up from school and rushed him to his pediatrician. After explaining everything that had just happened to him, she scheduled an appointment two days later with a neurologist. The doctor ordered an EEG, which came back normal and scheduled him for an MRI on March 9th. Now the day is March 10th. This was the day my body paralyzed with fear. We received a phone call from the neurologist (a phone call that no parent ever wants to receive) Cohen, had a mass on his left frontal lobe. March 11th, we were scheduled to see the neurosurgeon at Dell Children’s Hospital. My husband and I, were told the doctors didn’t know what kind of tumor was on his brain. The doctor did not seem worried and asked for us to come back in three months for a new MRI scan. Cohen had an MRI done on June 4th and, saw the neurosurgeon on June 10th. She told us the tumor was stable, low grade and possibly benign or stage one or two. The Neurologist still did not know what type of tumor it could be but informed us the tumor wouldn’t need to be immediately extracted. If it were to grow one-millimeter more, she would want to extract the tumor because Cohen could lose his motor skills. That being said, we wanted a second opinion. We have researched for the best neurosurgeons in the country and Texas Children’s was our next stop. We got in to see the oncologist June, 18th where he went over Cohen’s entire medical history, family history...etc. They decided they would take our case. They had just received the scans that day and did not have a chance to go over them. As a result of the case, the oncologist was putting together a team of twenty-five specialists. On July 16th, the oncologist followed up with us after having a team meeting and mentioned they did not know what type of tumor it is but, believe they have narrowed it down to three different types of tumors. The tumor was very low grade, and it still did not need to be removed immediately. We were told that chemo and radiation could possibly be the first step to shrink the tumor before they surgically remove it. Also, from the two scans that were taken in March and June, there was now a 2nd tumor hiding behind the initial tumor. Due to the virus, we have to wait until September to do any new imaging as well as an in-person appointment. Dell (many details about our experience at Dell is being left out intentionally) and Texas Children’s opinions did not line up, we are seeking other opinions elsewhere to look at his case. Our next appointment, is in Colorado on August 6th. My husband and I, hope to find opinions that align with Texas Children’s opinion, so we can be closer to home. We will continue to update as we find out more information. Please keep Cohen in your thoughts and prayers, send strength for all of us. As this, is just the beginning of Cohens journey.
