I am updating you from our prison cell. So far, Nico’s high temp for today was 104. Nico’s ANC (absolute neutrophil count) is holding steady at ZERO for at least the 6th day in a row. On a positive note, none of us have been water boarded. Then again, there is still plenty of time for that since we are not escaping anytime soon. Our release requires either a dramatically improving ANC, or an absence of fevers for 24 hours and the last fever was 2 seconds ago. It is safe to say that because of the ANC, Nico will not start the next phase of chemo on Thursday. This is fine by us because Nico needs a break! The week/s off will delay/s his chemo end date, but as they say – this is a marathon not a sprint. There are still at least 5-6 months left of intensive chemo and then a little less than three years of maintenance chemo.
In spite of the fever, Nico seems to feel pretty good. The only sign that there is anything wrong is that he refuses eat. He is still playing, laughing and flirting like crazy (he had a thing for Latin women). In fact, he feels so well that he keeps begging, “Open door!” Nico is not allowed into the hall, much less the play area. We are not even supposed to keep our room door ajar. The physician that saw Nico on admission to the hospital (not our regular oncologist) tried to explain that it was “safer” for Nico to be sequestered. This doctor very knowingly nodded while she responded to my questions with a not-quite condescending “the room is the safest place for him.” Every Tom, Dick and Harry in the hospital comes into our room all day long – residents, fellows, nurse practitioners, nurses, nurse’s aides, social workers, meal deliverers. They wear the same shoes in our room that they wore into every other room in the hospital and traipse all over the only tiny space where Nico can move and play. I was not buying the “for Nico’s protection” argument. The oncologist that started seeing us on Monday, however, seemed like a straight shooter. So I re-asked, “Why are we confined to our room again?” VINDICATION! Aside from hand washing, there is very little data that shows that these “precautions” have any benefit at all. Add it to the list of rules that have no evidence to support their existence. There are so many! The doctor today did at least raise a plausible argument for our captivity – “If Nico has a virus, he could potentially pose a threat to other patients.” This proposition also lacks any real evidence behind it, and assumes that Nico will lick or wipe snot in public locations, but the latter is fairly plausible. So we will continue our compliance just in case. At least it makes more sense and the doctor implied that we might be able to run the halls at night if no one was around.
I am learning all kinds of things through this whole experience. I have learned that most of what people say is wrong or at least not totally accurate. None of us know as much as we think we do. I definitely include myself. What do I know? Of all the things that I think I know, how many of them do I really know are true? How much of my “knowledge base” was gleaned by listening to someone that really did not know what he/she was talking about? The people that I trust the most are the ones that admit they do not know all the answers. The doctor today did that. We had a whole conversation about “neutropenic precautions” and how difficult it is to determine what good they actually do, if any. It is important that we like our doctors because they comprise most of our human contact these days. Nico grabbed the doctor from today around the legs as he was trying to leave and started screaming “No!” the doctor looked confused and I explained that Nico enjoyed his company. Nico might need to be re-socialized after the intensive phase is over. J His parents might need that too (I admit having the please-don’t-leave-us-here feeling that Nico displayed).
Our doctors reassure us that unexplained fevers and long hospital stays are a normal part of treatment. They tell us that Nico looks good and that fevers and neutropenia are a normal consequence of the chemo. So we will wait for it to pass and find ways to entertain ourselves in our cell. Being stuck in tight quarters has given me a chance to further bond with my little boy, something that I did not think was even possible. Nico is funny. In 6 days, he is officially two and ½ and he already thinks (knows?) that Jeff and I are complete idiots. When we were admitted on Saturday night, there was a baby in the ER crying. Nico has talked about that baby everyday since – “Baby sad. Baby scared. Baby needs McDonald’s.” When I told him that babies do not eat McDonald’s, he scoffed, shook his head and said “babies have McDonalds, mom!” He said it with complete contempt for my stupidity. When I explained that the babies drink milk from their mommies, he actually pretended to gag and laughed like I had told him a dirty joke! I do not know where he gets this stuff, but we do have a good laugh and that really is the best medicine anyway.
In spite of the fever, Nico seems to feel pretty good. The only sign that there is anything wrong is that he refuses eat. He is still playing, laughing and flirting like crazy (he had a thing for Latin women). In fact, he feels so well that he keeps begging, “Open door!” Nico is not allowed into the hall, much less the play area. We are not even supposed to keep our room door ajar. The physician that saw Nico on admission to the hospital (not our regular oncologist) tried to explain that it was “safer” for Nico to be sequestered. This doctor very knowingly nodded while she responded to my questions with a not-quite condescending “the room is the safest place for him.” Every Tom, Dick and Harry in the hospital comes into our room all day long – residents, fellows, nurse practitioners, nurses, nurse’s aides, social workers, meal deliverers. They wear the same shoes in our room that they wore into every other room in the hospital and traipse all over the only tiny space where Nico can move and play. I was not buying the “for Nico’s protection” argument. The oncologist that started seeing us on Monday, however, seemed like a straight shooter. So I re-asked, “Why are we confined to our room again?” VINDICATION! Aside from hand washing, there is very little data that shows that these “precautions” have any benefit at all. Add it to the list of rules that have no evidence to support their existence. There are so many! The doctor today did at least raise a plausible argument for our captivity – “If Nico has a virus, he could potentially pose a threat to other patients.” This proposition also lacks any real evidence behind it, and assumes that Nico will lick or wipe snot in public locations, but the latter is fairly plausible. So we will continue our compliance just in case. At least it makes more sense and the doctor implied that we might be able to run the halls at night if no one was around.
I am learning all kinds of things through this whole experience. I have learned that most of what people say is wrong or at least not totally accurate. None of us know as much as we think we do. I definitely include myself. What do I know? Of all the things that I think I know, how many of them do I really know are true? How much of my “knowledge base” was gleaned by listening to someone that really did not know what he/she was talking about? The people that I trust the most are the ones that admit they do not know all the answers. The doctor today did that. We had a whole conversation about “neutropenic precautions” and how difficult it is to determine what good they actually do, if any. It is important that we like our doctors because they comprise most of our human contact these days. Nico grabbed the doctor from today around the legs as he was trying to leave and started screaming “No!” the doctor looked confused and I explained that Nico enjoyed his company. Nico might need to be re-socialized after the intensive phase is over. J His parents might need that too (I admit having the please-don’t-leave-us-here feeling that Nico displayed).
Our doctors reassure us that unexplained fevers and long hospital stays are a normal part of treatment. They tell us that Nico looks good and that fevers and neutropenia are a normal consequence of the chemo. So we will wait for it to pass and find ways to entertain ourselves in our cell. Being stuck in tight quarters has given me a chance to further bond with my little boy, something that I did not think was even possible. Nico is funny. In 6 days, he is officially two and ½ and he already thinks (knows?) that Jeff and I are complete idiots. When we were admitted on Saturday night, there was a baby in the ER crying. Nico has talked about that baby everyday since – “Baby sad. Baby scared. Baby needs McDonald’s.” When I told him that babies do not eat McDonald’s, he scoffed, shook his head and said “babies have McDonalds, mom!” He said it with complete contempt for my stupidity. When I explained that the babies drink milk from their mommies, he actually pretended to gag and laughed like I had told him a dirty joke! I do not know where he gets this stuff, but we do have a good laugh and that really is the best medicine anyway.
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