On Wednesday October 19, 2016 our lives as parents was shattered. My spouse was gone 2 hours away finishing the last couple weeks of military training with the Air Force. I woke up and went about our normal day and routine. Getting the kids up, Sammy (4 years old) ready for school and Logan (18 months) ready to tag along for our day. Dropped Sammy off at Pre-K then brought Logan home to work on a shadow box I was doing for our bed room. At 1100 I went to get Sammy from school, where the teacher told me that he had thrown up about 10 minutes prior to me arriving. This in itself was not alarming. We had been dealing with him throwing up for months and had not found an answer for the cause, partly because it would happen, then go away, then happen again and stop again. But this time it was different. He had been sick, or so I thought, on Monday. He threw up in the wee hours of the morning on Monday and continued to do so into the early afternoon hours. But back to normal Sammy quickly. I thought nothing of it, until his teacher told me he had thrown up. I realized he wasn't sick Monday this was his puking problem reappearing again. But she told me he was calm that day. He had no interest in playing Red Light, Green Light during PE and overall just a bit more clingy than usual. When we got home I got him out of the car and he stumbled pretty bad backwards when he went to walk. In that moment it was like I got gut punched and knew something bad was happening with Sammy. I began to think maybe his balance, and all these other issues that were happening were not related to his autism, but maybe they are linked to his vomiting. Maybe he is dizzy. When my spouse had vertigo he was nauseated and threw up. Maybe he is puking because he is dealing with something neurological. I immediately call our pediatrician and ask what we should do. They called back and told me to immediately take him to the ER.
Well my gut was right. It was more right than I could have ever dreamed or imagined. By 1800 I learned our son had a tumor in his brain. I could not even breathe. I just had to be strong for him and for our youngest son. Charles was in training and I couldn't even tell him. By the time he called they were prepping Sammy for an MRI to get a better idea of what the mass really looked like. I finally spoke to him at 2000. Told him they found a mass in his brain and were doing more tests. But that is all I had. Soon after Sammy was taken off to get an MRI and Logan was picked up by a friend. As reality sunk in that this was going to be a long haul and not an in-and-out visit. Then I waited.
About the time Sammy got out of the MRI recovery we were admitted to the hospital, Charles magically showed up. A huge blessing for me, as I was trying to not completely crumble on my own. We were soon told that there was a mass and that we would be speaking to on an oncologist Thursday. That they would have to remove the mass, but they were not entirely sure when. By this point it was after midnight and already into Thursday. It was a rough long and stressful day. But we eventually all got a bit of rest.
Thursday they decided to do a PET scan. To get further information about what they were dealing with for the mass. We spoke to the oncologist and where the word cancer was dumped on our world. I knew it was a possibility, but now it was fact. Or the possibility became real. By evening we were talking to a neurosurgeon and told he was getting surgery at 8am the next morning. We were told a whole lot, but our world certainly was crashing down around us. What started as a normal day on Wednesday was now ending with brain surgery on Friday morning.
In the days that followed Sammy's surgery, we learned that Sammy has medulloblastoma. A form of pediatric brain cancer. We learned that the plan for treatment would be a chemotherapy only protocol called HeadStart III. And we would start about 30 days out from initial surgery. We also learned that Sammy was impacted by the surgery and suffers from Posterior Fossa Syndrome (PFS). This syndrome is temporary, but can last 5 years or longer. PFS impacted his ability to talk, swallow, and impacted his gross motor functions. He is no longer able to walk, sit or have purposeful movements. We learned that this was going to be an adventure for Sammy and our whole family. And that we were just going to have to trust God in everything.
This is our journey as it unfolds.