This is the second 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 3: 'Then There Were Angels'
The Subtle Symptoms
A month later Caleb had another migraine episode similar to the first one. Again, we assumed it was allergies. Then in late May the school nurse called to say Caleb was in the office complaining of a stomachache. He had told me earlier that week some of his friends faked being sick to go home early, so naturally I thought he might be faking too.
In retrospect I feel guilty even thinking that. Caleb had never lied to us and never faked being sick. He came home early that day, rested for an hour and seemed to be fine.
Caleb's Story: Part 3
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It was around this time Greg noticed Caleb would sometimes be off-balance if he stood up quickly. This was a symptom we chalked up to him being a gangly, fast-growing beanpole of a child.
Another subtle symptom was his vision. In April, Caleb complained that words were blurry when he would read close up. So, we assumed he may need glasses and paid a visit to the eye doctor, who gave Caleb’s vision a clean bill of health. He never mentioned blurry vision again, but he also failed to tell us that he was seeing double at times.
Caleb's Story: Part 1
It was his second year of baseball and his batting seemed off. Admittedly, most kid’s baseball skills are terrible at that age, which is why they are so darn cute to watch.
In Caleb’s case he saw two baseballs coming at him instead of one. He never told us that, and we assumed batting was just not his strong suit.
In mid-June Greg, Caleb and Hawley, our dog, accompanied me as I travelled for a week to finish work on my master’s degree. Caleb was tired and didn’t feel well for two days on that trip, but because I had been battling a cold we assumed he was, too.
By weeks' end we both seemed fine and while I flew back to Philadelphia for work they headed off for a boys' trip to fish and visit family in Florida.
The next two weeks were a turning point for Caleb’s health. The migraines, vomiting and dizziness increased in frequency. Yet each time he was fine for several days afterward, leaving us even more confused. Now that initial instinct I had of a brain tumor was a full-blown concern.
Greg cut the trip short and returned to Chicago where the first stop was Caleb’s pediatrician. Of course, Caleb exhibited none of the symptoms we had seen, so a battery of tests was ordered … everything except an MRI. This is where I regret not being a pushy parent and insisting on an MRI that minute.
While we awaited the test results Caleb’s episodes got worse. Two days later we took him to the emergency room. They hydrated him, observed him and sent him home. No MRI.
The next three days he was back to normal, no headaches, eating like a little pig, smiling laughing, playing baseball. Then on the fourth day Greg called to tell me Caleb was talking, but not making sense. He was also complaining of a headache and very dizzy. They headed to the doctor, I was working at NBC 10 and so I was on speaker phone during the exam.
My first words were “Is the MRI scheduled?” and the doctor answered “Yes, I ordered one STAT.” The doctor finally saw all of the symptoms we had been describing and he told us this was either a brain tumor or gastrointestinal and we would have an answer very soon.
It was then my heart sank. I knew it was a tumor. You see, what I haven’t shared up until this point is my sister Ann died of a malignant brain tumor when we were children.
My mind and body went on autopilot at work. Everything was a blur as I waited for Greg to call me back after the MRI. I vaguely remember the newscasts that evening. During the 6 p.m. newscast Jacqueline London asked how Caleb was doing; we had discussed his headaches several weeks before. I told her he was at the hospital getting an MRI. Both her and Jim Rosenfield were shocked and offered to stay with me at the station while I waited.
I wanted to be alone and opted to go home for the phone call. Already things began to spin around me. How could this possibly be happening?
And then my phone rang.
The Nightmare Phone Call No Parent Ever Wants to Receive
Greg was sobbing and I knew instantly. I don’t know if was shock or angry at myself for not acting sooner, but my first response was “I knew it.” The guilt and pain and fear for my son was almost too much to bear at that instant.
I sat down, placed my head between my legs and cried. Greg sent me this text image of the lemon-size tumor and orange-size capsule taking up nearly half of Caleb’s brain. It was clear Caleb had been in great pain and in retrospect complained so little. How did we miss this as parents?
Greg was beyond words and asked me to call the doctor for details. He told me an ambulance had been called to take Caleb to Lurie Children’s Hospital of Chicago, where a pediatric neurosurgeon named Dr. Amanda Saratsis would evaluate Caleb’s tumor and give us a diagnosis. Because of his condition there was no option of travel to any other hospital, including the Children’s Hospital of Philadelphia. Thankfully, Lurie Children’s Hospital in Chicago is considered one of the best in the nation, like CHOP.
During our call, Caleb’s doctor did mention this may be an operable tumor, so I Googled pediatric brain tumors to prepare myself for what we may be facing. Did you know there are dozens and dozens of different brain tumors? Being a person of faith, I just knelt and prayed openly to God, Jesus, Mary and the Guardian Angels to spare my little boy and for mercy, guidance and strength so Caleb, Greg and could handle this crisis. Then I called my boss Anzio Williams, I pride myself on not crying in the work place, but I started sobbing while I explained the situation and my need to leave now.
His first words were let me get you a flight, just head to the airport. We were shorthanded in the weather department that day and there was no one to finish my shift, but he told me not to think about it and to just get myself on the plane. I started throwing things in a suitcase and headed for the airport. I would later find out I had mismatched shoes, lots of yoga pants and little else.
In the car I called my other boss, Kathy Gerrow, who told me my only job now was taking care of Caleb. She would cover my shifts and take care of anything else I needed. I was grateful and speechless at how quickly they sprang into action to help.
The hardest call was to my parents to tell them their only grandchild has a brain tumor. Remember they had lost my sister, their daughter, to a brain tumor. We cried together, they hung up and made plans to be in Chicago the next day.
Meanwhile, I was on the last flight to Chicago that night and it was only when I arrived at the airport that I realized I was still wearing the pink lace dress I had worn on TV that evening. I didn’t want to show up at the hospital in a pink frock and since so much had already happened that night, I guess it didn’t seem strange to ask the female gate agent at Southwest to help me get the zipper down on my dress so I could go change into one of the plethora of yoga pants I had packed.
That’s when Mother Nature stepped in and my flight was delayed 3 hours – due to severe weather in Chicago. If that isn’t irony, I don’t know what is. When we landed there was another hour delay on the taxiway due to lightning in the area.
I finally made it to the hospital at 5 in the morning. Caleb was stable and resting. The pediatric nurse came to check him every 30 minutes while Greg and I sat quietly and waited for the neurosurgeon to meet with us.
Part 3 of Caleb’s video story is told by my friend and colleague Jim Rosenfield. I will also post the remainder of my Caleb’s Story blog.
I thought we had lost him when he collapsed and coded just hours after arriving at the hospital. From his resuscitation and 7-hour emergency surgery to the recovery and prognosis, you’ll meet his amazing surgeon and learn why more funding is needed for research on pediatric brain tumors.
Also, you'll learn how angels, a miracle, music, the Cubs, family and the kindness of strangers played a large part in his story and how Caleb schooled all of us with his kindness, manners and bravery during the crisis. Finally, I'll share what Caleb remembers about all of this.
Meet Caleb's Doctor
Dr. Amanda Saratsis, Lurie Children’s Hospital of Chicago
Brain Tumor Research at Lurie Children's Hospital
Children's Brain Tumor Tissue Consortium (Lead by CHOP)
Donate to Lurie Children's
