Win like Drake

On July 17, 2017, we took our family out to breakfast on a Saturday morning.  Our family had recently returned from a week-long pioneer trek and were enjoying some pleasant conversation in the car on our way to the restaurant (something not always common with three teenage siblings!).  As our family took their seats in the booth at the restaurant, our 14-year-old son, Drake, was the last to take his seat. He stood at the end of the table and appeared to be deciding which side of the booth he wanted to sit in.  He continued to stand as if he was not able to make a decision.  His Dad grabbed him by the arm and pulled him into the booth to sit down.

Drake 1

He asked Drake a question, but after a long pause he didn’t respond. We thought he might have been teasing us, or mad at one of his siblings.  We asked him a question again to which he didn’t respond or didn’t even appear to hear the question.  We began asking Drake questions but he didn’t seem to have the ability to respond.  His Dad had once worked with a colleague who had seizures from time to time, and Drake’s behavior seemed eerily similar.  At first, Drake wasn’t able to respond at all, as if no one was in the room with us.  Finally his mom began to panic, she wasn’t sure if he was playing a joke on the family, or if something was really wrong, she said, “Drake, you’re scaring us, if you don’t answer, we are going to call 911!”  Then after a few minutes he could respond a little, but it was taking him a long time to recall well known information such as the current day of the week, the year he was born, or the President of the United States.

Both Mom and Dad knew that something wasn’t right! Instead of ordering breakfast, we got everyone back into the car and headed for our local urgent care facility.  The urgent care staff was very responsive and brought Drake back to be seen as soon as we told them his symptoms. After giving Drake a brief exam and making sure he was stable, the urgent care staff encouraged us to take him to Primary Children’s Hospital in Salt Lake City immediately. Our neighbors and close friends met us at the urgent care and took our other two children home.

We arrived at Primary Children’s Hospital an hour later and after a short wait, Drake was taken into an exam room with a hospital bed to rest until the doctor came in to see him.  After an examination, Primary Children’s Hospital’s personnel felt it was likely that Drake had experienced some type of seizure.  After about two hours, they felt Drake had stabilized with the exception of high blood pressure (which he had never had) and released us to take him home.

In what would be the first in a series of miraculous events, prior to leaving the hospital, medical personnel were able to help fast-track Drake for a visit with a pediatric neurologist.  Normally it can take several weeks to months to get an appointment with a neurologist. However, we were able to visit with Dr. Lloyd the following Thursday!  We met with Dr. Lloyd and after spending time with Drake and assessing the events of the previous Saturday, Dr. Lloyd felt Drake had an “Absent Seizure.”   This type of seizure is characterized by the individual appearing to be awake but blank stare and unable to respond to others.  Dr. Lloyd recommended starting seizure medication and that Drake schedule an EEG to see if the cause of the seizures could be revealed.

The EEG was scheduled at Primary Children’s Hospital on August 7.  Shortly after the EEG procedure was completed we received notification that there were irregular results from the procedure.   We were told that his left temporal lobe was not firing properly.  It was recommended Drake have an MRI to see if additional imaging might reveal the cause of the seizure.  Shortly after the EEG and prior to the MRI, Drake had his second and third seizures on the morning and afternoon of the same day.

Drake 2

Once again, Primary’s staff was able to schedule the MRI much more rapidly than normal.  We arrived there early on the morning of August 7 for the MRI.  We were so excited to finally find out what was causing his seizures. They allowed us to accompany Drake to the room where the procedure would be performed as they prepared him for the scan.  Prior to the procedure beginning, they asked us to remain in the waiting room and then they would bring Drake to us when the imaging was complete. Drake’s older sister, Whitley, met us at the hospital and waited with us.

After what seemed like a very long time, and before Drake returned from the procedure, a doctor and resident came to us and asked if we could visit in a private area off the waiting room.  At that moment, we knew the news wasn’t going to be good, and we weren’t sure we wanted to know the cause of his seizures.  The doctor pulled up the MRI and showed us that it revealed a mass or lesion or tumor deep in Drake’s left temporal lobe of his brain.  We were told that the tumor was “most likely cancer.”

Hearing those words from a doctor isn’t an experience we had up to that point in our lives, and an experience we hope to never have again!  We spoke for a few minutes more and then they left the room and found Drake and brought him into us.  The doctor shared the diagnosis with Drake and then took time to answer all the questions we had.  The doctor asked if Drake had any questions and his only comment was, “Well, I guess the tumor is going to be fatal?”  The doctor indicated the outcome of the tumor was yet to be seen and the scan would be reviewed by a radiologist over the next day or two.  The doctor indicated that the next step would be to meet with the pediatric neurosurgeons at Primary Children’s Hospital.

Up to that point, we had never felt such deep sorrow and despair!  We left the hospital in a daze, still processing the words “tumor” and “cancer.”  As he had gone into the hospital very early that morning, we stopped off at a restaurant to have breakfast together and process what we had just been told. Drake seemed to be handling the situation better than either of us were at that point.  We called Drake’s older brother, Jordan, who was in Physician Assistant School at the time and shared the diagnosis with him.  He had questions and indicated he would talk with his professors about the situation.  We called both sets of grandparents to share the information with them.  When we arrived at home we had a somber discussion with Drake’s two siblings.  It was at this point Drake’s mom started wondering, “Why Drake?  Why not me?!”

The following day we were able to make an appointment for later in the week to meet with representatives from the PCH’s Pediatric Neurosurgery Department.  We met with Dr. Brockmeyer, who gave us the first good news we had received. Dr. Brockmeyer indicated that after reviewing the results of the MRI, he felt that the tumor may not malignant.  However, the only way to be sure was to perform a biopsy.  In the same breath of hope we thought he had just given us, he seemed to have taken our breath away again. Due to the location of the tumor, attempting to do a biopsy, or remove it via a traditional craniotomy (opening the skull and removing the tumor) wasn’t an option due to the risk of having to move through too much brain tissue to get to the tumor.  After hearing this, the little bit of hope we had received earlier evaporated.  While we were thrilled to know the tumor was “most likely” not cancerous, we were also concerned about Drake having to live the rest of his life. We had so many questions, such as how had he gotten this tumor?  How long had he had it? Why did he just start having seizures now?  Was the tumor going to continue to grow?  What was his life going to look like from this point on?  What other limitations might the seizures bring into his life?  Drake loved participating in athletics including playing basketball, football, and rugby.  He was also looking forward to the process of preparing to receive his driver’s license.  All of these activities could potentially be affected by this diagnosis.

We asked Dr. Brockmeyer if there were any other options for Drake.  He indicated Drake’s situation wasn’t within his area of expertise, but he did have a colleague he wanted to consult with regarding Drake’s unique situation.  We assumed he would need to contact this other provider and then contact us in a few days after consulting with the colleague in question.  He asked us to wait in the room and he would return after attempting to make contact with the colleague.  Dr. Brockmeyer left the room and we were shocked when the door opened a few minutes later; he returned with another provider.  Dr. Brockmeyer introduced us to Dr. Bollo, another neurosurgeon in the department.  Dr. Bollo reviewed the scans with us and let us know about another potential option—a minimally invasive procedure known as laser ablation.  This procedure consists of making a small penetration in the skull, inserting a probe with a laser, guiding the probe to the location of the tumor via real-time imaging, and engaging the laser to destroy the tumor leaving the healthy tissue around unaffected.  While all surgery involves risk, this procedure typically involves a day or two recovery in the hospital and then life continues with little to no limitations.

We discussed with Dr. Bollo what the alternatives would be should we feel the surgery was too risky. As we discussed the situation, Dr. Bollo used the word “epilepsy” for the first time, and we were taken aback by it.  But after reflecting on it for a few minutes, we realized that Drake had now become part of that group known as “epileptics” and that his future would involve the treatments and limitations of having epilepsy.  Dr. Bollo encouraged us to discuss the situation as a family, and if we decided to pursue the surgery to contact his office.  We left the office feeling optimistic for the first time since the diagnosis.  We decided to gather the entire family together to discuss the situation.  We all went to Heber City and rented a couple of cabins for two nights and spent time with each other.  We gathered around a campfire one night and everyone had a chance to share their feelings and concerns. We gave Drake the final opportunity to share his thoughts and feelings and he indicated he felt like he would like to have the surgery.  It was at this point that Drake’s Mom decided we needed to have a family picture, (she was still feared that the tumor was malignant and that possible the surgery would not turn out well) in case it were to be our last family picture together.

When we returned home, we contacted Dr. Bollo’s office and let them know we wanted to proceed with the surgery.  On August 17, we heard back from Dr. Bollo’s office and the surgery was scheduled for August 31. Dr. Bollo’s staff apologized for the delay in scheduling the surgery.  They let us know that it takes time to coordinate this type of procedure as the procedure itself had to be scheduled at the University of Utah Hospital because they were the only facility at that time, that had the intraoperative MRI necessary for the procedure.  After the procedure was completed, Drake would be moved to Primary Children’s Hospital’s Intensive Care for recovery and after-care.

The morning of August 31, we left our home in Tooele, Utah at 4:45 am to arrive at the University of Utah’s Hospital by 5:45 am.  We checked and went to the Neurosciences Center on the third floor for final preparations prior to the surgery.  Drake’s two oldest siblings came to the hospital that morning to see him before he was taken to surgery.  A wonderful and personable anesthesiologist came in to visit with us and to start the preparations for the surgery.  Just before they took Drake to surgery, Dr. Bollo came in to visit with us.  He wanted to give us an overview of the timeline for the day and to remind us of the potential side effects of the surgery.

After they took Drake to surgery, we all went to the waiting room where we would spend most of the day.  Drake’s older siblings stayed for a time but then eventually had to leave for school and work.  After a few hours, Dr. Bollo came to the waiting room to give us an update.  As the University is a teaching hospital, Dr. Bollo had a few students with him who were observing the procedure.  Dr. Bollo let us know that the pathway was prepared and that they had taken a biopsy of the tumor.  They had sent a portion of the biopsy to the hospital lab for a quick evaluation and they believed the tumor was benign, but that it would be a week before the definitive lab work would be available.  It turned out the results came back sooner than they expected his tumor was indeed negative for cancer!  The type of tumor Drake had was called ganglioglioma , which are tumors that start from groups of nerve cells (ganglion and glial cells) and grow in the brain and they are very rare. 

Dr. Bollo communicated to us that they were going to do some additional imaging and then they would proceed with destroying the tumor.   About two hours later, Dr. Bollo returned with the students to let us know that the procedure was complete and that post-procedure imaging indicated things went even better than they had hoped for and were able to get the entire tumor without destroying any healthy brain tissue.  Dr. Bollo told us that they would be bringing Drake from recovery to take him to the Pediatric Intensive Care Unit (PICU) at Primary Children’s.  Within 30 minutes, they brought Drake out, lying on his surgical bed and we were able to walk with him to the PICU.

When we arrived at Drake’s room in the PICU, we witnessed a beautifully coordinated “hand-off” between the University of Utah personnel, who performed the surgery and the Primary Children’s Hospital team that would handle Drake’s aftercare.  Within 30 minutes of arriving in the room, Drake was awake and alert.  We couldn’t believe that within such a short time he was fully conscious and completely coherent.  We were blessed to have a wonderful team of people who cared for Drake throughout the night.  Several people important to Drake came to visit him at the hospital and were allowed in the room one at a time.  Both sets of grandparents, all Drake’s siblings, and one of Drake’s football coaches came to the hospital to visit.  Drake’s football coach brought a large banner signed by all members of the football team wishing him a speedy recovery. 

The following morning Drake was visited by several doctors who marveled at how quickly he was recovering.   At noon Dr. Bollo came to check in on Drake and indicated he had made such remarkable progress that if things continued he would be released that day.  Drake’s Mom panicked!  She told Dr. Bollo that she had given him her complete trust up until that point.  She told Dr. Bollo that he had spent six hours inside his brain the day before, and that she thought it was too early to take him home.  Dr. Bollo addressed all her concerns and reassured her by having him get up and had Drake walk several loops around the PICU to verify he was prepared to go home.

It took four hours for the hospital to generate Drake’s discharge paperwork, because they hadn’t directly released someone from the PICU before and weren’t aware of the proper procedure.  They indicated that patients are always transferred from the PICU to a regular hospital room, and then released from there to go home.  We stopped at the pharmacy in the hospital to fill prescriptions and then made our way home.  A short time after we arrived at home, Drake was asleep on the couch, less than 36 hours after having brain surgery!   

Over the next few days and weeks we watched Drake closely for any of the potential side effects of the surgery.  We met with Drake’s counselor at the school to update them regarding Drake’s current state and to make arrangements for his school work.  Approximately 10 days after the surgery, Drake returned to school part-time for the first week, and then full-time the following week. 

Drake continued to take the anti-seizure medication. It made him extremely tired and resulted in a several small naps each day, however, he was able to function and return to most of his normal activities.  There was one small hiccup, Drake had what appeared to be a seizure, the week before Thanksgiving.  We went for a visit with Dr. Lloyd and he indicated if we were concerned it might be wise to have a post-surgery MRI.  We were able to schedule the MRI the Wednesday before Thanksgiving. This was both good and bad...good in that it would provide some peace of mind, but bad in that we would have to wait over the holiday weekend for the results of the scan to be read.  The following week the results came back and did show some scar tissue.  The results were shared with Dr. Bollo and he called and let us know there was no need to worry.  Dr. Bollo indicated that most radiologists weren’t familiar with reading this type of scan and we didn’t need to be concerned.  

  In February of 2018, we went for a six month post-op MRI and a visit with Dr. Bollo.  He showed us an MRI from right after the surgery, the MRI three months after the surgery and the MRI taken that day, six months post-op.  Dr. Bollo indicated the scans looked exactly the way he would expect them to at each phase and things were progressing exactly as hoped.

Due to the excellent progress we had been seeing and lack of seizures, Dr. Bollo discussed a plan for slowly decreasing the dosage of Drake’s anti-seizure medication.  We felt comfortable with that process and agreed to the plan Dr. Bollo presented.  To celebrate the good news from the six month post-op scan, we let Drake choose where to have dinner and he chose Red Lobster.

Drake 3

We have gone back for an MRI and visit Dr. Bollo every six months and the news has continued to be positive.  Due to the tumor, the medication and surgery (and our desire to be cautious), Drake missed playing football his freshman and sophomore year.  A new coaching staff at the high school persuaded Drake to give football another try his junior year.  He recently finished his junior year of football, and even after missing two years, was a full-time starter on the junior varsity team and played in most varsity games. A few weeks ago he was chosen as a captain of the varsity football team for next year.  In December, he also received his driver’s license.

We will forever be grateful for all the little miracles that lined up to make the big miracle possible! We can’t speak highly enough of the staff and facilities at Primary Children’s Hospital.  Once we decided to pursue the surgery, Dr. Bollo’s staff took over the process and handled everything.  As we prepared for the surgery, we didn’t have to worry about all the little details; those were all taken care of by Dr. Bollo’s staff.  As we have gone back every six months for MRI’s and checkups, we continue to be impressed with the caring and professional way we are treated at Primary Children’s.  We couldn’t recommend a healthcare facility any more highly than Primary Children’s Hospital!

Stories on this site are shared with permission of the patient or their legal guardian.

Learn how our brain & spine services can help your child here.