“If you drink much from a bottle marked 'poison' it is certain to disagree with you sooner or later.” -- Alice in Wonderland
Nico frequently asks us if we can see his head shaking. We never have. When I asked him to show me what he thinks his head is doing, he shakes his head back and forth as though he is emphatically shaking his head “no.” Since this complaint has become more frequent, we started to worry that this was evidence of neurological injury.
We saw Nico’s attending oncologist on Tuesday and I asked about this with a host of other symptoms. Nico’s oncologist is a sensitive, tactful and compassionate man. So please understand that my paraphrasing is through my own blunt and cut-and-dry filter. Our oncologist said, “Well, we do put chemotherapy in his cerebrospinal fluid. He is suffering from neurological insult. And he, and every other child in treatment, is going to have side effects from these drugs. But still, the vast, vast majority of children recover. And those few children that do not recover completely, are only so mildly compromised that the injury is only detectable with extensive and very detailed testing.” The doctor went on to explain that even kids that experience neurotoxicity so severe that they present with symptoms of a stroke are still expected to make a full recovery. But probably the most important information elucidated for me was that even in these severe cases, the chemo does not stop. Our doctor reminded me that these are “extremely important drugs” and whether or not they are damaging, the side effects are better than the alternative.
So yes, this shaking could be related to treatment. But there is not a damn thing that we can do about it. This is both a punch in the gut and reassuring. I really appreciate our doctor’s candor. He does not sugarcoat the facts, although he is able to deliver hard truths in a way that we can manage. I decided to ask a family friend, a neurologist, and he responded with the cigar quote from Freud, “Sometimes a shudder is just a shudder.” Then he added that he does not think of Nico as injured. He thinks Nico as vulnerable to his changing biochemistry.
It is strange the things that we come to accept.
Our doctor told me, “You are doing the right thing. You pay attention. You watch him. You report what you see. This is exactly what you are supposed to be doing.” The message was that nasty side effects are expected. I guess they would be. The constant illnesses, the bleeding mouth sores, the leg pain, the periodic limping are all expected. Three and a half years is just a long time to roll with the punches.
But we are rolling.
“Alice: How long is forever?
White Rabbit: Sometimes, just one second” -- Alice in Wonderland
Nico frequently asks us if we can see his head shaking. We never have. When I asked him to show me what he thinks his head is doing, he shakes his head back and forth as though he is emphatically shaking his head “no.” Since this complaint has become more frequent, we started to worry that this was evidence of neurological injury.
We saw Nico’s attending oncologist on Tuesday and I asked about this with a host of other symptoms. Nico’s oncologist is a sensitive, tactful and compassionate man. So please understand that my paraphrasing is through my own blunt and cut-and-dry filter. Our oncologist said, “Well, we do put chemotherapy in his cerebrospinal fluid. He is suffering from neurological insult. And he, and every other child in treatment, is going to have side effects from these drugs. But still, the vast, vast majority of children recover. And those few children that do not recover completely, are only so mildly compromised that the injury is only detectable with extensive and very detailed testing.” The doctor went on to explain that even kids that experience neurotoxicity so severe that they present with symptoms of a stroke are still expected to make a full recovery. But probably the most important information elucidated for me was that even in these severe cases, the chemo does not stop. Our doctor reminded me that these are “extremely important drugs” and whether or not they are damaging, the side effects are better than the alternative.
So yes, this shaking could be related to treatment. But there is not a damn thing that we can do about it. This is both a punch in the gut and reassuring. I really appreciate our doctor’s candor. He does not sugarcoat the facts, although he is able to deliver hard truths in a way that we can manage. I decided to ask a family friend, a neurologist, and he responded with the cigar quote from Freud, “Sometimes a shudder is just a shudder.” Then he added that he does not think of Nico as injured. He thinks Nico as vulnerable to his changing biochemistry.
It is strange the things that we come to accept.
Our doctor told me, “You are doing the right thing. You pay attention. You watch him. You report what you see. This is exactly what you are supposed to be doing.” The message was that nasty side effects are expected. I guess they would be. The constant illnesses, the bleeding mouth sores, the leg pain, the periodic limping are all expected. Three and a half years is just a long time to roll with the punches.
But we are rolling.
“Alice: How long is forever?
White Rabbit: Sometimes, just one second” -- Alice in Wonderland
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