Twice since my daughter died have I been convinced that Mary Tyler Son had a brain tumor.
The first time was last April when four days in a row he woke up complaining of a headache. Headaches, but specifically morning headaches, are one of the primary symptoms of pediatric brain tumors. I didn’t know that before I moved to Cancerville, but now it is seared in my brain. His two year old self also seemed not to be 100%. His appetite was down a little. He was a little more needy. Yes, those are both symptoms that something could be seriously wrong as well. It doesn’t matter that they are also symptoms of a cold or a virus or a simple change in mood.
My thoughts raced. I went from 0-60 in seconds, anticipating his diagnosis, treatment, and certain death. I spoke about it with Mary Tyler Dad incessantly during that week. A pit presented itself in my stomach that grew larger by the hour. I dreaded picking Mary Tyler Son up from the babysitter, wondering what she would reveal about the symptoms he surely demonstrated. Every day, it was the same, “Nah, he’s good. He ate well and played well and all seems fine.” That didn’t matter. All I felt and all I saw confirmed the worst. It was happening again.
On the morning of the fourth day, I called my sister at 7:00 a.m. She was sleeping. Bah! How can she sleep at a time like this?! Then I called my Dad. He gave me sane and good advice. Call Dr. Stew. He was right. We contemplated calling our pediatrician, but when you’re worried about your only surviving child having a brain tumor and one of the leading pediatric neurooncologists in the world is in your cell phone, you call him.
I did. Dr. Stew returned my call by lunch time. He was just as I had remembered him. Calm, compassinate, caring. He listened to my concerns and asked me questions. At the end of that exchange he told me that he was more concerned by the tone of my voice than anything I had said. He offered to see Mary Tyler Son that day. He offered to schedule an MRI before the weekend, if that was what was needed. And then he spoke some wisdom that I think about every day, “You can’t ever erase what you know,” he told me. I felt better instantly. Just confirming that Stew was there and available seemed to be enough to soothe my panicked and traumatized soul.
Strangely, Mary Tyler Son never complained of another headache. I got over it and life returned to normal.
Until, that is, last week. On Wednesday morning, as he was leaving for his sitter, we noticed a distinct limp in Mary Tyler Son’s gait. He told us that his foot hurt from the “perfect rock.” The perfect rock is a largish granite rock in a neighbor’s yard that we walk past daily en route to his sitter. Mary Tyler Son likes to crawl on it, stand, and launch his little three year old self off of. He is proud of himself. I encourage it regularly, standing there and applauding his every leap. Sure enough, his sitter confirmed that, yes, Mary Tyler Son and his little friend had been jumping off of it repeatedly on Tuesday afternoon. Because our neighbors had picked him up and sat with him until bedtime so we could be at a St. Jude’s fundraiser (oh, the irony), we hadn’t noticed it until Wednesday.
But, you see, none of that mattered because in my head Mary Tyler Son had a brain tumor. A modified gait or loss of a physical milestone is another one of the primary symptoms of a pediatric brain tumor. What we were seeing was surely that. His foot looked fine. I could flex it every way under the sun and there was no pain. This had to be, of course, a brain tumor. Mary Tyler Dad thought I was crazy and overreacting. There was more discussion about seeing the pediatrician. We set a deadline for Monday. If on Monday there was still a funny gait, we would deal with it then. I tried to breathe. In and out. In and out. In and out. The dread was highest again at pick-up time. What would the sitter say? Would she, too, see what I saw — the initial formations of the disease that would take both my son and daughter?
Adding to my anxiety/fear/terror was Mary Tyler Son’s words. He starting asking, in a whiny tone and with his arms extended, “Mama, carry me.” Those three words plague me. They clang around my head like the clapper inside a bell. Loudly. LOUDLY, LOUDLY, LOUDLY. Those words fill me with dread as they are the exact three words Donna spoke before she herself was diagnosed with her brain tumor. I thought she was being lazy, or wanting to be coddled. Most of the time I would carry her in those couple of weeks, but some of the time I required her to walk, even when she wailed or cried. That particular memory haunts me.
In the end, Mary Tyler Son is fine. No worries. I have relaxed, as of Mother’s Day, as his limp has disappeared. And with the limp disappearing, so too have the commands to carry him. I am breathing again. In and out. In and out. In and out.
PTSD is how cancer still fucks with me. As Dr. Stew says, I can never erase what I know. And I know too damn much.
Filed under: Pediatric Cancer