Frustrating. It was simply frustrating.
We continued to care for Addison through much of the beginning of April, when her one-sided weakness progressed to an inability to move her right leg. And the pain continued; no matter how many pain killers we added, Addy's pain was refractory to treatment. I don't remember seeing her do much besides grimace and shout irritable words at her parents during much of that month.
And no wonder... an adult in real pain is just as irritable. A three year old is the worst. I felt deeply sorry for Addison's mom and dad during this time. No matter how hard they tried, or what they did, nothing could really make her comfortable. Sometimes, for short periods of time she was able to rest or sleep; but these were just tiny pauses in a very frustrating life for them.
Sadly, as the middle of April approached, Addison began having difficulty with urination and defecation. Ah... this broke my heart. It is almost universally a sign of spinal cord compression, and so yet another MRI was done. Unfortunately, this one continued to show worsening "enhancement."
Now, at that time I had not taken care of very many children with spinal cord tumors. Addison was really the first. However, even I at that point began to get suspicious. It seemed almost irrelevant what some medical scan showed, when we couldn't actually interpret it- wasn't the fact that Addison seemed to be losing neurologic function weekly proof enough that her tumor might be spreading?
Several other doctors agreed; however, the radiation oncologist and the brain tumor doctor both still believed that the cause was post-radiation necrosis. I guess sometimes, there are things we never know for sure...
Even when it might make a huge difference.
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