Once we arrived at our local children’s hospital, so much of what went on became a blur because everything moved so quickly. When we were at the ER, the doctor noticed that he had what he called a mass in his leg. We knew that something was wrong with his leg but it had never been called a mass. This must have been what alerted the children’s hospital to take a femur x-ray. Upon arriving, our son’ mental status was quickly declining. He could not recognize his dad and me and he seemed to be looking past us. He was in and out of consciousness at this time. They were asking us a ton of questions and trying to ask him questions which he could not answer. They decided to do an MRI of his femur and his brain. Part of me felt relieved because we had an MRI scheduled in a few weeks so I naively figured that we wouldn’t have to do it again. I was nervous because he was going to have to be sedated and honestly, I don’t think I truly understood that it meant that he would have a tube down his throat that would never come out. They told us it would take 3 hours and I couldn’t imagine how I could handle being away from him for 3 hours. They put us in a little conference room to wait. Since I had just given birth 6 days prior, I was in full postpartum mode. I was pumping, bleeding and hormonal as all get out. 2 hours after the start of the MRI, a doctor came in and told us that our son had a tumor in his femur and had had multiple strokes. For as long as I live, I will never understand how a seemingly healthy child could have multiple strokes. They admitted him to the PICU. The first night, they were getting him settled and went into high gear to figure out what was going on with him and how to address it. I think we may have slept a few hours that night but we never could have prepared for the completely insane ride we were about to endure.
We were told that he had cancer and the doctors thought it was Ewing’s Sarcoma. As of Monday, he was still somewhat coherent. Since he had the tube in his mouth, he had on restraints because they didn’t want him to pull it out. This was something that bothered me so much as his mom because I KNEW how much he would have hated it because he had a horrible gag reflex. When he would come to, he would get scared and usually the nurses voice or one of our voices would calm him down. I could recall 8 different teams of doctors who were doing process of elimination to see if it was a virus or an autoimmune disease. There was an oncology team, neurology team, neurosurgeon team, infectious diseases, cardiology, cardiothoracic surgery team. We were getting so much information fire hosed at us every second, there was no way we were keeping up or completely following along. We had complete hope that he was going to be ok. We realized it was going to be a long road and we were thinking about arrangements to have our 3 year old cared for on a long term basis while we cared for our boy. Tuesday was the day that everything changed. We were taken into a conference room with the heads of all of the teams of doctors where they explained to us the gravity of the situation. They said that he had a total of 6 strokes, strokes in his spleen and kidney, a flap on his mitral valve that they weren’t sure if it was the reason for the strokes or not. They told us at this time, that if had one more massive stroke, that he could die. Honestly, it was the first time I even considered it as a possibility. The doctor also had a serious talk with us about holding on to hope and celebrating the smaller increments. If he had a good few hours, we would celebrate that and say that he won the day. We never lost hope. We knew how strong our boy was and he had a huge community of people praying for him and rallying around him. The next few days was one step forward and several steps back.
I’m so glad you have been chronologically sharing your journey. It’s healing for all of us.