Read Rally Kid Alexander’s Story

In late May 2023, we were preparing for a much-an- ticipated family vacation at the beach, and we re- marked–as we often did–how wonderful life was. On Memorial Day, the whole family went to a pa- rade. While we were waiting for Charlotte to march by, Alexander fell out of his stroller and hit his head. He had vomited that morning but had seemed to feel fine afterwards. We watched him closely for concussion symptoms. On Wednesday after Memo- rial Day, Alexander vomited again in the morning, but again he seemed not to have anything conta- gious–no signs of a stomach bug. He and Christy flew down to Pensacola to join Christy’s parents shortly before we were to convene for our full family vacation.

Alexander was fine Thursday, but he vomited again Friday morning. We felt sure these were concussion symptoms, but we were concerned. We reached out to his pediatrician, who suggested that we take him to an urgent care center in an abundance of caution. Christy did that, but the urgent care cen- ter could not do the CT we thought we needed and sent them to Florida Gulf Coast Hospital’s emergen- cy department. The ED doc tested Alexander for strep–vomiting is a symptom of strep–and the test was positive. Matt was particularly skeptical that strep was the culprit, but we hoped an antibiotic and a day’s rest would put him right.

They did not put him right. Charlotte and Matt flew down to Panama City on Saturday and joined up with the whole family. Alexander seemed OK that day, if a little lethargic; he did not vomit that day and he ate well that night. Early Sunday morning, we could hear him moaning in the next room. Shortly thereafter, he came into our room saying he needed to throw up. He vomited, but then seemed better. We gave him his antibiotic, which he promptly vom- ited. We were extremely concerned–it was becom- ing clear that this was not strep. Alexander went downstairs and played with his cousin Evan, ate some eggs, and vomited again. We had to take ac- tion. We were almost decided to fly back to Chicago to get care we were more confident in, but we de- cided to take him back to the ED in Panama City and insist on a CT scan before giving up on our vacation.

As we were deciding what to do that morning, we were Googling his symptoms, and one clue pointed in a very worrying direction: vomiting in the morn- ing, without symptoms of a stomach bug, is indica- tive of a brain tumor. We didn’t think that was like- ly–pediatric brain tumors are rare–but we both had a pit in our stomachs as we drove to the hospital.

The ER doc that day watched Alexander walk very closely and did other tests to check his neurological function. He asked repeated questions about Alex- ander’s gait. We mentioned that we were there for a CT scan. The doc said a CT was “weakly indicated” based on what he was seeing but that he would or- der one if we insisted. We both insisted. At about noon, Alexander was in the CT scan. At 12:30, we were sitting in our hospital room when the doc and a nurse came in. The doc told us to sit down. We both knew right then. Neither of us will forget the moment our lives changed. “There is a mass.” Those words are burned into our brains.

The doc showed us the images of a 4.2 cm tumor in the fourth ventricle (the cerebellum) of Alexander’s brain. We were devastated. We called family to tell them something worse than we could imagine. The doc said that time was of the essence–we needed to get to Pensacola, to the children’s hospital that could treat Alexander. The tumor had to be resected (surgically removed); there was no time to waste. Problem was, there was no ambulance with- in hours of Panama City to take us. After a while– hours, when we were told we had not a moment to lose–we were informed that we were being airlifted to Pensacola. But after another while–again, over an hour–we were informed that the helicopter that would take us was grounded by storms in the area. So we waited.

As we waited, each of us talked to the doc in more detail about what we were facing. It was clear that this doc had not come to work that Sunday prepared for this. He was amazed that we were insistent on the CT scan. He even asked Christy, “How did you know?” One message we want everyone who learns Alexander’s story to hear is this: you know your child better than anyone possibly could, including all the doctors in the world. If you see something wrong, take it seriously. It might not be catastrophic, but it’s worth being persistent to get answers.

At 7:30 pm Sunday night, 7 hours after his diagnosis, Matt and Alexander were in an ambulance headed to Pensacola. Christy met us there at about 9:45. We met with the pediatric oncologist at Ascension Sacred Heart, who told us that Alexander needed
an external ventricular drain (EVD) and a tumor re- section. We felt very cared for in Pensacola–the staff there was very kind and attentive–but we felt trapped. The hospital had only one pediatric neurosurgeon, which meant that there would be not be a surgeon available at all times in case of emergency. The neurosurgeon felt that the EVD and the tumor resection would happen at the same time. We needed to explore other options for brain surgery on our son than a hospital with only a single neurosurgeon.

Monday morning, Christy activated her network of contacts in the medical field, and we almost immediately began conversing with renowned oncologists and surgeons to figure out our options. Our prefer- ence was to go back to Chicago, where we could be close to home and where there is a world-class children’s hospital, but the neurosurgeon there would not accept our transfer. We asked questions of him- -how could it be less dangerous to stay in Pensacola, where Alexander could not receive 24/7 care, or to take an hours-long ground transfer to a bigger hospital in the South than to take a 2-hour med jet to Chicago?–but his mind was made up. We needed a Plan B.

Christy’s network came through for us. We narrowed our search down to Nashville, Birmingham, and Atlanta, because we needed geographical proximity. Matt preferred Atlanta–he grew up there and has family there–so we found, vetted, and decided on a truly outstanding surgeon at Children’s Health- care of Atlanta (CHOA) Scottish Rite. Within minutes of seeking a transfer to CHOA, Christy’s network linked us with an OR nurse there, and the ball was rolling. By this time it was late in the evening. Christy and Alexander boarded an ambulance–with minimal suspension–and headed off for Atlanta. Matt hopped a flight to Atlanta early Tuesday morning and met them at CHOA.

At CHOA, we finally began to see progress. The EVD was placed Tuesday, and the tumor resection was completed Wednesday. Dr. Brahma and his team achieved a gross total resection, the best possible surgical outcome. While this was fantastic news, this did not mean that the cancer was gone. There is no way to remove all of the cells, and this cancer grows fast and is stubborn.

Then, it was Alexander’s turn to shine. Surgery in this area of the brain can lead to a host of complica- tions, but Alexander had none of them. Before we knew it, he was walking, talking, singing, dancing, drawing, building with Legos, and showing us and everyone what a strong, special boy he is.

Even before the thrill of surgical success had worn off, we started to grasp the difficulty that lay ahead. We had very little time to decide on a course of treatment–specifically, whether to pursue radiation therapy, with all the cognitive and other risks it pos- es to children. Alexander’s age puts him into a gray area: if he were under 3, avoiding radiation would be a top priority for treatment; if he were 6 or old- er, radiation would be de rigueur. He is right in the middle. We got a variety of perspectives from phy- sicians around the country, some of whom would avoid radiation and some of whom would make ra- diation a crucial component of treatment. We had an opinion from CHOA, but we needed a second, independent opinion.

After many phone calls and many tears contemplat- ing what seemed to be nothing but bad options, we decided to seek a second opinion from St. Jude in Memphis. We were still waiting at that time for test results to come back, and St. Jude promised to do their own tests. We knew from having talked by phone with Dr. Gajjar that St. Jude’s approach would involve radiation. Even as we flew to Memphis, we were contemplating where else we might go if we could not agree to subject Alexander to radiation.

St. Jude is a very family-centered place. We felt very cared for right from the beginning. It is also widely known as one of the very best places for pe- diatric cancer care in the world and came highly recommended by many respected voices. We went through a week of testing and orientation to St. Jude and then flew home to Chicago before radiation therapy was to start. The day we flew home, any doubt about our course of treatment was removed when we learned that the testing showed that Alex- ander’s medulloblastoma is Group 3 with MYC am- plification, high risk. We decided to accept St. Jude’s treatment recommendation.
We are now two weeks into radiation and chemo- therapy at St. Jude. He will receive 30 treatments. He is one of only 3 children receiving both right now. He will then have a 6 week break before starting very intensive chemotherapy.

Alexander is doing remarkably well, and, with the support of the best family and friends in the world, his parents are holding up well too. We know that, even under the best of circumstances, we will face the most difficult challenges we will ever face. But we feel like we are giving Alexander the best shot at survival we can give him. And we only get one shot.

Alexander’s light is so bright. We believe it will con- tinue to be bright, even though he will not be the same child he would have been if not for cancer. He will light up the world in a different way, but we bee- lieve in him nonetheless. Please support him along with us and share his story.

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