There is a strident rule in nursing: no matter how close it is to the end of your shift, you never, ever, under any circumstances describe the shift as “quiet” or “slow.” If you do, the other nurses will fiercely reprimand you and within minutes everything goes to hell – someone codes, a bedridden patient has an episode of diarrhea, a psychotic patient decides to “breakout,” admissions arrive and everything happens all at once – the magic in your own words will destroy the peace that you dared to acknowledge. It has been very difficult for me to reconcile this belief (or at least fear) in the magic of the jinx with my belief (or at least hope) in the power of positive thinking.
So with that, it is with great trepidation that I write that Nico is doing well, we have had a pretty darn good week (relatively speaking) and we are really grateful for this reprieve (I am knocking on wood as I type).
ALL (acute lymphoblastic leukemia) is cured in phases and each phase has its own name. This week marked the middle of the second phase called “consolidation.” This phase is marked by the weekly lumbar punctures (spinal taps) accompanied by the injection of chemotherapy into Nico’s cerebrospinal fluid. Nico is put under anesthesia for all of these punctures (and we are thankful). There will be 22 lumbar punctures like this throughout the three and a half years of treatment, but after this month, they will be dispersed farther apart. One of the common occurrences at the halfway mark of consolidation is that white blood cells take a serious dip. The parents of kids with leukemia plan their lives around one particular lab value, the ANC (absolute neutrophil count). This number gives us some idea about how susceptible Nico is to infection. When this number is low, a fever (even low-grade) will require hospitalization. The lowest end of normal is 1,500. As of today, Nico has exactly zero neutrophils. Jeff and I were both disturbed by this initially, but our doctor and the clinic nurses say that this is not uncommon. So I guess we won’t be visiting Chuck E. Cheese or public swimming pools anytime soon. We try not to live in a bubble, but since secondary infections kill more kids with leukemia than leukemia does, we have to be fairly neurotic.
Nico has done amazingly well this week – making jokes, acting silly, laughing hysterically and playing with his old vigor. His age and subsequent communication limitations probably mask some of his own difficulties dealing with the changes in his life, but Nico also clearly lives in the present. As one of his nurses said: Children do not let cancer define them. They continue to live life like children with the interruption of needle sticks, chemo, fevers, nausea and neuropathy. Jeff and I cannot say the same as our lives are consumed with leukemia while Nico’s life is consumed with learning how to manipulate the child locks on the candy drawer. Nico is happy when things go his way even when just moments before the whole world conspired against him. That being said, each week when I put numbing cream on his port, even though it is painless, he starts to cry. He knows what is going to happen after that cream goes on his tummy. But Nico continues to be Nico and his parents continue to look to him as a guide in how to cope. He is our teacher in this process.
So tonight I will take a deep breath and try to enjoy this moment. Our little boy is safe at home and happy.
So with that, it is with great trepidation that I write that Nico is doing well, we have had a pretty darn good week (relatively speaking) and we are really grateful for this reprieve (I am knocking on wood as I type).
ALL (acute lymphoblastic leukemia) is cured in phases and each phase has its own name. This week marked the middle of the second phase called “consolidation.” This phase is marked by the weekly lumbar punctures (spinal taps) accompanied by the injection of chemotherapy into Nico’s cerebrospinal fluid. Nico is put under anesthesia for all of these punctures (and we are thankful). There will be 22 lumbar punctures like this throughout the three and a half years of treatment, but after this month, they will be dispersed farther apart. One of the common occurrences at the halfway mark of consolidation is that white blood cells take a serious dip. The parents of kids with leukemia plan their lives around one particular lab value, the ANC (absolute neutrophil count). This number gives us some idea about how susceptible Nico is to infection. When this number is low, a fever (even low-grade) will require hospitalization. The lowest end of normal is 1,500. As of today, Nico has exactly zero neutrophils. Jeff and I were both disturbed by this initially, but our doctor and the clinic nurses say that this is not uncommon. So I guess we won’t be visiting Chuck E. Cheese or public swimming pools anytime soon. We try not to live in a bubble, but since secondary infections kill more kids with leukemia than leukemia does, we have to be fairly neurotic.
Nico has done amazingly well this week – making jokes, acting silly, laughing hysterically and playing with his old vigor. His age and subsequent communication limitations probably mask some of his own difficulties dealing with the changes in his life, but Nico also clearly lives in the present. As one of his nurses said: Children do not let cancer define them. They continue to live life like children with the interruption of needle sticks, chemo, fevers, nausea and neuropathy. Jeff and I cannot say the same as our lives are consumed with leukemia while Nico’s life is consumed with learning how to manipulate the child locks on the candy drawer. Nico is happy when things go his way even when just moments before the whole world conspired against him. That being said, each week when I put numbing cream on his port, even though it is painless, he starts to cry. He knows what is going to happen after that cream goes on his tummy. But Nico continues to be Nico and his parents continue to look to him as a guide in how to cope. He is our teacher in this process.
So tonight I will take a deep breath and try to enjoy this moment. Our little boy is safe at home and happy.
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