For some reason, it is easier to find time to write when life is tough than when times are good. Adam is good. We are good. But here is an update of our progress the last two weeks.
Two Fridays ago was Adam's second clinic in Phase 2. He reports to the clinic to get his metaport accessed so the anesthesiologist can administer the "sleepy milk." This is a narcotic that basically knocks Adam out completely. They do this because they have to administer an injection of chemo in the spinal fluid. Fridays usually take at minimum four hours. One hour is in the clinic, one hour waiting for surgery, 40 min to check in for surgery, 20 min for the actual procedure, and one hour in which Adam has to lie down after surgery while the anesthesia wears off. This Friday, though, he needed a blood transfusion because his platelets were down at 7.0. That took about 4 hours, but Adam slept most of the time. His energy was totally zapped from losing the red blood cells. Nothing concerning though - just part of the process.
It's funny how indifferent we are becoming to the chemo already. We are down to the one pill a day before he goes to bed. I finally set an alarm on my phone because we never remember! Then, right before we go to bed, "did you give Adam his medicine?" "no, didn't you?" Crap. So, we have to wake him up 2+ hours into his slumber to swallow a horse pill. We use the alarm now.
Last Friday was the same drill. Check in, blood pressure, temperature, weight. Chatted about the disappointment in the announcement of iPhone 4s instead of the 5g (what is "s" anyway?). Dr. Beach comes to check in. Nothing really to discuss because we're just in the routine. She was pleased that the last bone marrow aspirate they did showed absolutely no cancer cells. We kind of already knew that, but I will listed to that again and again - it's nice to hear. Then nurse Courtney comes to access the line. We are rushed upstairs because our appt is in 5 minutes, but I know better than to expect an in and out kind of morning. We wait in the 2x2 room for another hour while a nurse checks us in, another nurse confirms we know why we are there and what the procedure is, the anesthesiologist checks in, and finally, we see the surgeon. The worst, I mean WORST part is having to stand with Adam while he goes to sleep. I end up in tears every time. I hate seeing the medication take control of his body like that. If at any point in this whole process Adam has looked weak and helpless, it is when he is injected with that stuff. Probably because he goes totally asleep instantly. You hear his pulse on the monitor at a normal rate and then at a resting rate in seconds. I am trying to think, "peaceful" but all I can think is "intoxicated." Ugh. Again, I only have time to get a cup of coffee and open my book before I am called back to the recovery area. There is some chatting with the nurse monitoring Adam, but this is the longest hour of the day - waiting for Adam to wake up. But then again, you want him to sleep as long as possible because he has to lie there for at least an hour, and it is extremely difficult to entertain a kid who is lying down, basically still for that long. We always make it though. Clinic - out.
So other than the nightly pill and the Friday clinics, Adam is acting like his usual self. He has this monkey thing going on in the morning when he wakes up. The routine is to come into our bedroom and lay in our bed until 7 when he can ask for milk. So, he is up at 6:30 (pretty typical) oooohing and jumping like a monkey. In his high pitched voice, he asks for some milk, and the whole morning is filled with his hilarious, kind of hysteric, antics. Like covering his face with a blanket and pulling it off to reveal some crazy face he is making. Or jumping on all fours on the bed and panting like a dog. He is just super silly, and kind of random, and it sounds really weird now that I am repeating it. Guess you had to be there? While his moods are good and energy is non-stop, we are still waiting for his features to go back to normal. He is still pretty puffy. It will happen. I was comparing pics tonight. Here is a before and after.
