This is the third installment of NBC10 First Alert Weather chief meteorologist Tammie Souza’s story of her son Caleb battling a brain tumor.
Read Part 1: 'Tragedy, Bravery and a Very Big Miracle'
Read Part 2: Picking Up & Going
The Tumor & the Doctor
We sat in Caleb’s hospital room and watched the sunrise over Lake Michigan. He was sleeping peacefully. Monitors and medical equipment lined his bed with various wires leading back to his small body. There was an IV line in his arm and an ID band on his wrist. On the dry erase board above his bed was his name and weight. Caleb had lost an alarming 9 pounds. He was already a thin boy and now he looked so tiny and emaciated. I just kept asking myself how did this happen? Two days ago he was playing baseball and eating pizza.
Paige, the pediatric nurse assigned to Caleb stopped in to check on him several times. She was the nurse we would credit with helping to save his life the next day. More on that later. He was stable, but on medication for pain and swelling in his brain. Greg had already spoken to Caleb’s neurosurgeon the night before while I was traveling from Philadelphia to Chicago. It wasn’t until later that morning I finally met Dr. Amanda Saratsis. She is a petite, soft-spoken woman with long, blonde hair – one of six pediatric neurosurgeons at the hospital where she also conducts research on pediatric brain tumors. I instantly felt comfortable with her. Maybe it was the confident and reassuring way she carried herself or the respectful manner she spoke with both Caleb and us.
We had so many questions: What type of tumor? Is it malignant? Is it operable? How rare is it? How long has it been growing? What caused it? Why is he having headaches, dizziness, vomiting and balance problems? She told us Caleb’s tumor was likely a low-grade glioma known as a Pilocytic Astrocytoma. I had read about this rare type of pediatric brain tumor. They are the most benign and slow growing with about 2,000 diagnosed in children each year in the U.S. They can be located in various parts of the brain, but typically are found in the rear portion like Caleb’s. Size is what makes them deadly. His was very large, about the size of a lemon with a surrounding capsule the size of an orange. It was sitting in the back of his brain squeezing out the area where the cerebellum should be. It was also closing off the opening to his fourth ventricle, essentially shutting down his body functions.
Dr. Saratsis said it was not clear from the original MRI if Caleb’s tumor was benign or if it had spread to the spine or was still fully encapsulated. If it had not spread there was a good chance it could be removed. Everything was speculation at that point, but we saw a glimmer of hope and chose to focus on that. She ordered 3-D MRI with contrast to get a better view of the tumor, the brain and the spine. If everything looked good Caleb would head to surgery in less than 36 hours. First, a hole would be drilled in the top of his head to insert a tube through his brain to control the flow of his cerebral fluid. Then Caleb would be flipped over and they would make a 7 inch incision through the muscle on the back of his neck and head. A portion of his skull would be cut out and then the tumor and capsule would be removed from behind a brain lobe. The entire surgery would take about seven hours. It was a good plan.
DAY 1 at the Hospital
We spent the rest of the day playing with Caleb. He wasn’t allowed to eat before the MRI and he was getting very hungry. Greg and I had no appetite and we hadn’t slept in two days. So much of that day was spent in a haze. My parents arrived that afternoon, my brother Matt and sister-in-law Susie cut their vacation short and flew to Chicago and my sister Patty, who was also on vacation, re-routed herself to be with us and Caleb. One of Caleb’s best friends, Isaak, came to visit with his family. They decorated his room and provided some much needed relief and smiles. Numerous balloons, toys and stuffed animals arrived, which brightened his room even more. Jacqueline London sent a huge stuffed dog that Caleb slept with each night. He loved all these surprises. Throughout the day friends and colleagues called and texted. At one point I had to put my phone away because just answering everyone became overwhelming. I had sent notes asking for help from friends, prayer warriors and prayer circles. I knew in my heart each of the many prayers would make a huge difference in the outcome ahead. As the day wore on Caleb’s headaches returned. He was so hungry and the medicine made him feel sad. At one point he looked at me and said, “mommy I’m so sorry I got sick and kept you and daddy awake all night.” My heart broke and it was all I could do not to cry. I just hugged him and told him not to apologize, we love him more that the sun and moon and stars and it’s our job to take care of him. That’s when Greg and I decided it was time to make this tumor something Caleb could relate to. He loves Transformers – can name them all and has an impressive collection. His favorite: Optimus Prime, of course. If you know about Transformers then you will understand this next part. We told Caleb the tumor was like bad energon (the life source of Transformers) and the surgeon needed to remove it ASAP or he would become a Decepticon. We even bought a beautiful marble to give him after surgery as a symbol of the tumor.
By 9 p.m. Caleb’s headaches had worsened, he hadn’t eaten in 24 hours waiting for the MRI and tears rolled down his cheeks because he was so hungry. Finally, they came to get him for the MRI. He was given a light anesthetic to remain still during the one-hour procedure. Afterward he slept… we did not.
DAY 2 at the Hospital
As the sun rose that morning Greg and I realized it had been 56 hours since either of us had slept. We were still waiting for the MRI results and those early hours were the last quiet moments we would have for several weeks. Caleb woke up happy and smiling, he picked at his breakfast and we played. My parents, brother and sister visited and we took Caleb for a walk around the hospital. It was built specifically for children and families. There are large fish aquariums, gardens, a piano and music area overlooking the city, giant play rooms with views of Lake Michigan, a floor with a full-size fire truck, and sports rooms sponsored by the Cubs, White Sox, Bears, Bulls, Fire and Blackhawks. Many of the athletes visit the hospital daily. Each floor of the hospital is a specific animal. Caleb wanted the tiger floor, but that was the MRI floor, and we were the flamingos on Floor 19. Each hospital room is private, so although the floor was full of children battling life threatening conditions we saw very few of them.
Late that morning Dr. Saratsis stopped by to discuss the results of the MRI. Caleb’s tumor did appear to be encapsulated and there was no sign of spreading to the spine. The surgical plan was a go at dawn. We were very honest with Caleb and explained what was happening and why he needed the surgery right away. Dr. Saratsis even talked with him about everything she would do. Caleb asked two questions: Would it hurt? And, will the headaches stop? She told him he would be asleep and feel no pain and there would be no more headaches. He literally took a beat, looked at all of us, smiled and said, “OK.” That was it…no tears…no complaints…no other questions. Just OK.
I promised Caleb anything he wanted for dinner that night. He chose crab legs. I attribute that to my sister-in-law who loves crab legs and turned Caleb on to them at an early age. I had my second wind and set out in search of dinner. By the time I returned with the crab, Caleb’s headaches had returned. He was groggy from the extra pain medicine and had no appetite for dinner. I felt so bad. Things were changing quickly and I failed to give him his wish. Caleb’s headaches were happening more frequently and a few hours later he turned to me and whispered, “Mommy what if I don’t wake up from surgery, I’m afraid.” I was afraid too, but in that moment I chose to make a promise that would haunt me hours later. I looked him in the eyes and guaranteed everything would be fine and he would wake up.
Then There Were Angels
It had been hot in Chicago. No surprise for late July. The skies were clear and it was a muggy night in the low 80s. My parents left for their hotel a few hours earlier. They would wait for our call to come back in the morning when Caleb was heading to surgery. The room was dark and quiet except for the constant alerts from the monitors at Caleb’s bed. Strangely those consistent beeps were a comfort to us. Greg and I were both exhausted and a little loopy. That’s when he started staring out the window. I asked what he was looking at and he said “snow.” I didn’t know what to say. It was clear and muggy and 80 degrees out. I didn’t see a thing. He pointed and said look at those white waves in the air moving up and down. I made him sit down and shut his eyes. Then he stood up and said don’t you see it? He pointed out the window and described a flowing sea of white waves like doves or the wings of angels. It was at that moment the first of the alarms triggered on Caleb’s monitors.
The Crisis, the Collapse and the Code
Caleb’s headaches had accelerated to a dangerous rate. Paige, his pediatric nurse, was in and out of the room constantly. His heart rate would soar to 100 and then dip to 38. It was as if he would relax into a brief sleep and then less than a minute later the headache would wake him up and his heart would race. Greg and I were very worried. Caleb was doing breathing exercises to control the pain. They had given him the maximum medication allowed and the headaches were worsening. At one point Greg asked if this could kill him. The resident on call said no, this was common with this type of tumor. At that moment I should have screamed “BULL.” I was sleep deprived and blame myself for the pain Caleb endured over the next six hours. The nurse was also concerned and was in contact with Dr. Saratsis who had been monitoring Caleb all night. What we didn’t know is he was deteriorating so rapidly that surgery was moved up and the OR was being prepped.
At 5 a.m., Paige told us they were coming to get Caleb and we needed to be ready. There were papers to be signed and one of us was constantly holding Caleb during these headaches. I was starting to panic. This was not the plan we had discussed. Caleb was in a full-blown emergency. Then as the team was wheeling in the gurney, and Greg was grabbing our things, Caleb let out a primal scream that I will never forget. It was like a wounded animal and came from such a deep place. Then he went limp. His heart raced to 168 and all signs stopped. Paige hit the Code button and before I could react there were 30 doctors and nurses in his room and the hallway. I was calling Caleb’s name, Greg was gently rubbing his sternum and then my head started spinning. I was crying and angry and confused. How did this happen in 36 short hours. This tumor was operable and now he was dying before surgery. This was my fault. I needed to be that pushy mom I always was. Nothing seemed real. We waited our whole lives for a child. He was awesome and loving and perfect. I was praying and yelling and living in some other world at that point. Paige grabbed me and hugged me and said he’s not going to die. They started to resuscitate him and placed a new IV. His tiny face was covered by an oxygen mask. We kept calling his name, but his eyes wouldn’t open. They gave him medication to shrink the fluid on his brain and then slowly after minutes his eyes fluttered. I called his name but his eyes were blank. I was certain there had to be brain damage. I spotted my parents in the hall. Why were they here? We hadn’t called them and it was still pre-dawn. They were sobbing and hugging each other. Later my dad told me they woke up sensing Caleb needed them and they came to the hospital immediately without knowing what had happened. That’s when the hall was cleared and we all ran with Caleb’s bed to the elevator and down to surgery.
It was surreal like a TV drama. There was shouting as we were running and pushing the bed. It slammed the walls as we turned the corners. After what seemed like an eternity we reached the operating room. Greg and I were still trying to get a response from Caleb. I was quizzing him, with who are we and what is your dog’s name? That’s when Caleb opened one eye and said “Mom! It’s Hawley.” My heart jumped. He was pissed and tired of the questions and of course he knew who his dog was. Caleb was still in there and fighting, but he was so weak from a night of headaches every minute. I turned to the anesthesiologist and asked if he was strong enough for surgery. Recall, I had promised he would wake up and now I was terrified he would not. She answered honestly “We have no choice.” That was not what I wanted to hear and I started looking around for Dr. Saratsis. The room was full of activity and out of the corner of my eye I saw her running toward me. She grabbed Greg and I, looked at us and said “Let me do this. I have to relieve the pressure on his brain so I can get him back to you. Trust me.” She was so clear and confident and a mom herself so we stepped back and said “Go, do it.” They grabbed Caleb’s bed and I was sobbing. His eyes were half closed and I was shouting “I love you Caleb.”
Then the doors closed and he was gone. I never thought I would see him again.
Check back later Thursday for Tammie’s conclusion to Caleb’s brain tumor story.
Meet Caleb's Doctor
Dr. Amanda Saratsis, Lurie Children’s Hospital of Chicago
Brain Tumor Research at Lurie Children's Hospital
Modifying the Future
Research Highlights
CHOP's Neuro Oncology Program
Children's Brain Tumor Tissue Consortium (Lead by CHOP)
Donate to Lurie Children's
Brain Tumor Research
General
Donate to Neurosurgery Work at CHOP
Photo Credit: Tammie Souza