This phase, DI, is two months long with a potential break in the middle to let Nico’s blood counts recover. We have almost completed the first month. We are done with the IV chemo for this month. No more of the nasty Doxorubicin; they do not use it during the second month. That is a relief. We are currently in our second round of steroids, so things are a little hairy over here, but luckily there are no steroids in the second half of DI. Also, our oncologist is back from his trip. Our oncologist did not agree with either of the other two doctors regarding the injection that ended up in my lap. He said that he spoke with the nurse that did the injection, and she could not guarantee that Nico even got half the dose. Our doctor said that even if Nico missed 1/10th of the dose, he thought it should be made up. His exact words were, “This is a no-brainer.”
This made me reflect on two things. First, this is why we prefer our own oncologist. He is cautious. He also understands Jeff and me. We feel like he is invested in Nico’s outcome and this is very important. Second, I am so glad that the nurse was honest. I think it would have been tempting to downplay what happened. I think a lot of people would have gotten defensive. She did not get defensive and instead plainly stated that she had no idea whether Nico got the chemo. I was really grateful for that. Problems cannot be fixed when people deny mistakes happen. Blame is not necessary, just address the issue – Nico might have gotten less chemo than he needs. So I felt that things were remedied. It means that we go back on Monday for a seventh shot though. Nico’s legs have to be aching. I cannot even imagine and don’t want to.
Today we went to clinic for the sixth injection and while loaded up on steroids. Nico has had it. He flipped out. He became hysterical once he realized where we were going. When kids are on steroids they frequently obsess over very specific things. So Nico started to obsess over wanting beans and rice on the way to clinic. Hey, I’m from Arizona and my kid knows his Mexican food. Nico insisted we immediately go to our favorite Mexican restaurant (instead of clinic of course). Once we were in clinic there was probably a good thirty-minute period where he screamed, “I want beans and rice” over and over while crying his eyes out. He would not be distracted. Toys, candy, root beer – I tried it all. Our favorite nurses were there again today. Separately each asked sincerely, “How can I help you?” I did not think there was anything in the world that was going to quiet him, but I was hoping he might just pass out from sheer exhaustion from all the screaming. I was a little nervous because all the families in clinic were subjected to this fit (we all sit in one giant room to get chemo). But I had to stay focused on my son. I am there to support him. That is my priority and frankly he cannot help it. This is not my boy, this is my boy pumped full of toxins and steroids. I reminded myself that every parent in that room knows what roid rage looks like on a child.
Then two of the nurses approached me and said that he might need fresh air and light. I did not feel they were trying to get rid of us. I felt they were really trying to help. The clinic is windowless and a little depressing, so fresh air seemed like a great idea. The nurse told me that we could leave as long as another nurse was with us. Nico has to be observed for a reaction for an hour after each shot. So one of the nurses agreed to walk with us down the hall. At first Nico continued to scream down the hall, but at least the other families were getting a short break from the yelling. The nurse kept calmly speaking to Nico, suggesting things he might like to look at and asking what he saw. After several minutes, he suddenly just stopped crying. Then we spent the next 30 minutes just walking around, outside the hospital, picking up rocks, riding the elevators. Then the nurse pulled him around in a wagon that he found in the hallway. She let him lead the charge and was so patient with him. She said that the nurses saw how hard this was on parents, and know that it does not stop when we get home. She said she just wanted to help us.
When I got home, I got a little emotional as I thought about how the nurses treated Nico and me. You spend so much time and energy trying to cope with this drug-ravaged little two-year old, and you know that in general people do not understand. They think he is being a brat or that we are bad parents. They cannot comprehend what the drugs are doing to him. But these nurses “get it.” They did not judge him or me, they just helped, and what a help it was. For thirty wonderful minutes Nico was just a little boy playing with rocks that happened to be outside a children’s hospital. It was a gift. When we left Nico calmly told the nurses “Thank you very much.” Yes, thank you.
P.S. We’re having beans and rice for dinner.
This made me reflect on two things. First, this is why we prefer our own oncologist. He is cautious. He also understands Jeff and me. We feel like he is invested in Nico’s outcome and this is very important. Second, I am so glad that the nurse was honest. I think it would have been tempting to downplay what happened. I think a lot of people would have gotten defensive. She did not get defensive and instead plainly stated that she had no idea whether Nico got the chemo. I was really grateful for that. Problems cannot be fixed when people deny mistakes happen. Blame is not necessary, just address the issue – Nico might have gotten less chemo than he needs. So I felt that things were remedied. It means that we go back on Monday for a seventh shot though. Nico’s legs have to be aching. I cannot even imagine and don’t want to.
Today we went to clinic for the sixth injection and while loaded up on steroids. Nico has had it. He flipped out. He became hysterical once he realized where we were going. When kids are on steroids they frequently obsess over very specific things. So Nico started to obsess over wanting beans and rice on the way to clinic. Hey, I’m from Arizona and my kid knows his Mexican food. Nico insisted we immediately go to our favorite Mexican restaurant (instead of clinic of course). Once we were in clinic there was probably a good thirty-minute period where he screamed, “I want beans and rice” over and over while crying his eyes out. He would not be distracted. Toys, candy, root beer – I tried it all. Our favorite nurses were there again today. Separately each asked sincerely, “How can I help you?” I did not think there was anything in the world that was going to quiet him, but I was hoping he might just pass out from sheer exhaustion from all the screaming. I was a little nervous because all the families in clinic were subjected to this fit (we all sit in one giant room to get chemo). But I had to stay focused on my son. I am there to support him. That is my priority and frankly he cannot help it. This is not my boy, this is my boy pumped full of toxins and steroids. I reminded myself that every parent in that room knows what roid rage looks like on a child.
Then two of the nurses approached me and said that he might need fresh air and light. I did not feel they were trying to get rid of us. I felt they were really trying to help. The clinic is windowless and a little depressing, so fresh air seemed like a great idea. The nurse told me that we could leave as long as another nurse was with us. Nico has to be observed for a reaction for an hour after each shot. So one of the nurses agreed to walk with us down the hall. At first Nico continued to scream down the hall, but at least the other families were getting a short break from the yelling. The nurse kept calmly speaking to Nico, suggesting things he might like to look at and asking what he saw. After several minutes, he suddenly just stopped crying. Then we spent the next 30 minutes just walking around, outside the hospital, picking up rocks, riding the elevators. Then the nurse pulled him around in a wagon that he found in the hallway. She let him lead the charge and was so patient with him. She said that the nurses saw how hard this was on parents, and know that it does not stop when we get home. She said she just wanted to help us.
When I got home, I got a little emotional as I thought about how the nurses treated Nico and me. You spend so much time and energy trying to cope with this drug-ravaged little two-year old, and you know that in general people do not understand. They think he is being a brat or that we are bad parents. They cannot comprehend what the drugs are doing to him. But these nurses “get it.” They did not judge him or me, they just helped, and what a help it was. For thirty wonderful minutes Nico was just a little boy playing with rocks that happened to be outside a children’s hospital. It was a gift. When we left Nico calmly told the nurses “Thank you very much.” Yes, thank you.
P.S. We’re having beans and rice for dinner.
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