The night before Payton was diagnosed, it was late, the nurse informed us there was a man who needed to speak with us. He led us to a small room with a table and 3 chairs. We sat down, and he started. The look on his face said it all, bad news. He could barely look us in the eyes. He seemed to study the fake wood looking table as he said “There is a mass on Payton’s brain, it’s not good”. Jason and I were in instant shock. I looked at my husband and literally watched his entire body slump, as the life drained from his body. I cried, we both cried. I mustered the courage to ask, “How big is it?” The grey haired man replied, “It’s big”, in a serious low tone. This sent both Jason and I into a frenzy. He then told us the oncologists would be in in the morning to talk to us more and explain in detail the mass. Jason’s fists slammed down on the table. I do not know what we were thinking in that moment, but I said “I need to go, we need to go be with him”, and we did. It was in that moment I began looking at my son, my youngest child, in a different light. After Payton fell asleep Jason and I talked. We tried to be hopeful. I remember telling him, “let’s not panic, he may have to have brain surgery, and it will be a long road, but he will be okay”. Who was I kidding? I was panicking as well. Jason ended up having to go to the ER at the hospital to get something to calm his nerves, as he was vomiting and feeling like he was going to pass out.
At this time, my biggest concern was that my 7 year old son would need to have brain surgery. Brain surgery is major, and scary to think about!
The next morning, the oncologist came fairly early. There were 3 other people with him I believe. My mom and sister had come in late the night before so they were there too. The Child Life specialists took Payton out of the room. The oncologist told us that Payton had a mass, a tumor, called Diffuse Intrinsic Pontine Glioma, in his brainstem. Jason asked if it was cancer. They said “Yes, it is, and these tumors tend to grow rather rapidly. This tumor is a bad one. About 99% of children succumb to this tumor within 9 months. There is no cure and the treatment has not had much, if any, progress in at least 50 years. What we usually do for these tumors is radiation and administer steroids”. In tears, I asked the oncologist, “How long does he have?”, the worst question any parent could need to ask. He replied, “If we do radiation, he could have 6, 9, or maybe even 12 months, we really can’t say for sure, it all depends on how the tumor reacts to the radiation. Many kids have what we call a “honeymoon period” after radiation, where they have no symptoms for a period of time”. I then asked, “What if he doesn’t have radiation?”. The oncologists said, “He might not survive 2-3 months”. We were in disbelief. How could this be? He was such a healthy, active, child who was full of life, but he was actually dieing more quickly than the rest of us. I cried, sad tears. I became angry, this oncologist who was probably in his late 50s, early 60s, had lived this long life, and was telling me my child would never see teen years. I wanted to take Payton’s place, I would have given anything.
We couldn’t give up hope, but at the same time the prognosis, 6-9 months, left us feeling pretty hopeless.
When they brought our son back to his hospital room, I remember I could barely look at him without my eyes filling with tears. I just wanted him to be ok, for all of this to be a bad dream. I remember literally thinking, “maybe this isn’t real, maybe they looked at the wrong kid’s scans”, but it was real, and less than 6 months later, we would tell our once healthy, energetic son, goodbye for the last time, as he slipped into heaven.
One thought on “Diagnosis Day”
Jessica and Jason, you are living every parents worst nightmare. I wish this had never happened to you. You are wonderful parents that made your son’s last six months as wonderful as you could. I really have no idea how you were able to get through that time without him really knowing what was happening. I know that I wouldn’t have been able to do that for my child. I have such respect and sorrow for both of you. I truly hope you both are able to get through a night with some semblance of peace and when/if you do that you don’t feel any guilt. You are forever in my thoughts and prayers.