This is the start of the third week of the phase. We had our appointment today. Accessing his port was still stressful as ever. Sometimes it doesn't phase me and other times it does. I had planned to go hang out in the bathroom and shed a few tears after today's port access. Alhamdulilah, I got distracted but made up for it after giving me a hard time about taking his steroid. Every other one he's okay with but he REALLY hates that one. I'm wondering if it will be like this every single time for the next three years or maybe by the second year it won't phase him. Guess we'll see.
This appointment his counts dropped a little only from 12.8 to a 12. Dr. Margolin said it most likely will drop the most after this week. He has thrush in his mouth so he has to take medicine for that. His father got the flu so now he has to also take tamiflu on top of everything else. Another step I've failed to mention is the medicine he has to take just for his mouth. He has to swish it around in his mouth a few times day. This is his favorite one since he gets to spit it back out. This is in order to prevent mouth sores.
He hasn't been feeling good lately. He's still pretty active but extremely sensitive and irritable. He seems to get tired faster. He's lost weight and seems to have frequent red eyes to me. I'm exhausted from a long day in the hospital and don't want to wake up in the morning knowing the very first thing I have to do is spoon this boy his steroid medicine. Almost a guaranteed fight every time.