We have finished front line chemo, also known as intense and intense is an apt descriptor. We are happy that we reached this milestone. The last day of front line felt a little different than I imagined it. First, we could not get totally excited because we are not really finished. We still have a little less than three years of less-intense, but still-not-fun chemo. We now have several friends with children in the maintenance phase, and it does not seem to be as easy as portrayed that fateful night in the ER when we got the diagnosis. Also, it is scary to lessen the chemo. We just have to hope, believe, know that Nico got enough chemo to obliterate the cells that did not belong in his body, and that his marrow will continue doing what it is supposed to do with less medication directing it. But enough of this worry!
It was a very happy day. The Erwinia shots were the pits, and they are over now. Nico had started to talk about them multiple times a day. The first words out of his mouth each morning were: I’m not getting a shot. The last words out of his mouth at night: I’m not going to the hospital. Everything around him started to resemble a syringe. He would be drinking a juice box and the next thing I know Nico is holding up the straw, and telling me that I have to get a shot. He reenacted these shots at least a hundred times with his father and me as patients. We were instructed to cry after he jabbed whatever wand-like device he found into our legs. After that, Nico would rub the area he pretended to stab and say, “It only hurts for a minute.” The Child Life Specialist at the clinic assures me that Nico’s response to these shots is really healthy. She compared it to when something traumatic happens to an adult. They usually respond by talking about it. They tell their family, friends and co-workers (or they keep a blog :)). They talk about it over and over until one day they just stop. She said that this play is Nico’s way of talking about it, and one day he will just stop.
So this morning Nico woke up and said, “I’m not getting a shot.” And I said, “It is the last shot.” I did not know if he understood at first, but it became clear that he did. Unlike previous visits to the clinic, he did not fight us to get dressed or get in the car. He even snacked at the clinic before the chemo arrived from pharmacy. The nurses knew that today was his last Erwinia, and that this marked the end of front line treatment. There was a bright pink wagon in the clinic today and after we had done our time, Nico wanted Jeff to pull him out of clinic rather than walk. So as we paraded through the hall, Nico waved and yelled goodbye to the nurses from his hot pink, rolling throne and the nurses all cheered, “Yay! Today was Nico’s last shot!” He was so happy!
The other good news is that Nico’s red blood cells crept up a tiny bit, just past the level needed to stave off a blood transfusion. He is recovering. He has zero neutrophils, so if he develops a fever we will have to stay in the hospital; but his blood is showing signs of recovery, and somehow he made it through the dreaded DI without requiring a red blood cell transfusion. That is pretty amazing.
We have a tradition. Every night as Nico falls asleep, we go over at least three good things that happened that day. Tonight Nico listed the following: I ate a croissant, I got a new garbage truck, the nurse gave me garbage, I had a meatball, Daddy played in my room. Then he snuggled into me and whispered, “I am so lucky.” If we can get Nico through this (and any other curve balls thrown his way) with this view of himself in the world, I will feel that we were successful parents. Our little boy is lucky.
Thank you for helping us through the last nine months. They were the hardest and longest of our lives.
Much love . . .
P.S. The picture this week is from a clinic event. A couple of the players from Salt Lake Real soccer team met with the kids from clinic. Nico had no interest in any of them since it was the first time he has been at a park in many months and was desperate to play. This was the only photo that we got of him with the group, and it basically required that we throw him towards the other kids and then take a picture before he could get up and run away. He is the one holding the ball (bald kids sort of all look alike :)).
It was a very happy day. The Erwinia shots were the pits, and they are over now. Nico had started to talk about them multiple times a day. The first words out of his mouth each morning were: I’m not getting a shot. The last words out of his mouth at night: I’m not going to the hospital. Everything around him started to resemble a syringe. He would be drinking a juice box and the next thing I know Nico is holding up the straw, and telling me that I have to get a shot. He reenacted these shots at least a hundred times with his father and me as patients. We were instructed to cry after he jabbed whatever wand-like device he found into our legs. After that, Nico would rub the area he pretended to stab and say, “It only hurts for a minute.” The Child Life Specialist at the clinic assures me that Nico’s response to these shots is really healthy. She compared it to when something traumatic happens to an adult. They usually respond by talking about it. They tell their family, friends and co-workers (or they keep a blog :)). They talk about it over and over until one day they just stop. She said that this play is Nico’s way of talking about it, and one day he will just stop.
So this morning Nico woke up and said, “I’m not getting a shot.” And I said, “It is the last shot.” I did not know if he understood at first, but it became clear that he did. Unlike previous visits to the clinic, he did not fight us to get dressed or get in the car. He even snacked at the clinic before the chemo arrived from pharmacy. The nurses knew that today was his last Erwinia, and that this marked the end of front line treatment. There was a bright pink wagon in the clinic today and after we had done our time, Nico wanted Jeff to pull him out of clinic rather than walk. So as we paraded through the hall, Nico waved and yelled goodbye to the nurses from his hot pink, rolling throne and the nurses all cheered, “Yay! Today was Nico’s last shot!” He was so happy!
The other good news is that Nico’s red blood cells crept up a tiny bit, just past the level needed to stave off a blood transfusion. He is recovering. He has zero neutrophils, so if he develops a fever we will have to stay in the hospital; but his blood is showing signs of recovery, and somehow he made it through the dreaded DI without requiring a red blood cell transfusion. That is pretty amazing.
We have a tradition. Every night as Nico falls asleep, we go over at least three good things that happened that day. Tonight Nico listed the following: I ate a croissant, I got a new garbage truck, the nurse gave me garbage, I had a meatball, Daddy played in my room. Then he snuggled into me and whispered, “I am so lucky.” If we can get Nico through this (and any other curve balls thrown his way) with this view of himself in the world, I will feel that we were successful parents. Our little boy is lucky.
Thank you for helping us through the last nine months. They were the hardest and longest of our lives.
Much love . . .
P.S. The picture this week is from a clinic event. A couple of the players from Salt Lake Real soccer team met with the kids from clinic. Nico had no interest in any of them since it was the first time he has been at a park in many months and was desperate to play. This was the only photo that we got of him with the group, and it basically required that we throw him towards the other kids and then take a picture before he could get up and run away. He is the one holding the ball (bald kids sort of all look alike :)).
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