Every time Logan starts to feel better, he gets knocked down again. I am over it. Last month they started him on Zantac to help with the reflux, chest pain and general ickyness. Once the steroids were over, it seemed to really help. I actually said a few times last month that he had felt better than he had in months. I think this was due to a couple of factors. The Zantac was helping a lot, and he went off the meds because he counts were low again. It is so frustrating to go in for a check to see how he is feeling, I tell them he is feeling good for a change, and then he counts are so low that he has to stop the meds. He really enjoyed stopping the medications. We still had him taking the Zantac, but no chemo pills which made him super happy each evening. In addition to that, I got a glimpse of what life without chemo will be like. One word: Amazing. I cannot wait until this is real life for Logan. It was a nice break from him feeling bad, but is also like a cruel tease. The "bright side" to having to go off the meds a second time is that Logan started back on a lower dose. A significantly lower dose than before. He was on 150% dosing due to counts and them slowly increasing the meds. Now he is on 50% dosing. It feels like he is taking so little compared to what we were used to taking each night. The upside is that he is still feeling somewhat better than before.
We went in for chemo last week, and he counts were low, but not low enough to stop the meds again. They are not ready to increase the dosage yet due to these low counts. This is perfectly fine with us for now, we are just worried that he may get sick. Lots of hand washing around here. It just seems there are cumulative effects of the meds, and the effects just keep getting worse and worse. Even a little bit now impacts his counts. The typical side effects seem more extreme the closer we get to the end. Just like my anxiety about it all. I know that it is protocol for them to go off meds for low counts, and start at lower doses. But in my mind, I am asking: "What does this do for his long term outlook?" I know I cannot control it, and I need to let go of the worry. But I think it will remain with me for the rest of my life. I am a changed person, and not all of it is good. All I can do is try to be positive and strong for my little man. He is still as charming as ever.
