Josh and I woke up on edge this morning. Adam's appointment to begin Phase 5, "Delayed Intensification" is this morning. Adam is basically going back on the same schedule as his first month in treatment. My way of handling the stress mimicked that of being 9 months pregnant and "nesting." Christmas cards in the mail, check. Laundry sorted and started, check. Dishwasher unloaded and bills paid, check! All before 7 am. On the bright side, motivation for these things is usually tough, so I should feel some freedom for being done. In addition, and worse, I was questioning all the things that have gotten me through the last four months... Peace? Must have been naivety. Strength? Must have been adrenaline. My crazy head taking over! Since this time I know what we are going in for, the shock isn't there nor the urgency, and I don't want Adam to do all this again (reminds of one of my favorite Danelle quotes from my MSSB days: "I don't want to be a pirate!"). And that trust in God's promises -- that just kicked in instantly on the morning after Adam was diagnosed, by the way -- was totally uncertain this morning! You may have caught on to what I was doing through these mindless chores though - trying to get some control. I have a hard time with this schedule and uncertainty of results (side effects-wise). There is no, "ok, Mrs. Hendren, let's take a look at your calendar to schedule our next appointment." Or, "first you can expect xyz is going to happen in 32.6 hours, and then..." In fact, we don't even know when our next appointment is until we go this one nor whether Adam will be feeling sick, tired, nauseous, losing hair, irritable, or hungry. Maintenance was nice while it lasted... Not a good start to this particular day.
On the other hand, Adam is in great spirits. He is full of energy! Our clinic room had two rolling chairs, so he was trying to balance with one knee on each chair. You might ask what mother would let her child balance on rolling chairs in a doctor's office because, yes, he did fall off and land on his be-hind, but this was better than jumping from the rolling chairs to the bed. We also played Checkers and D. Chronicles on the iPad and a new Angry Birds card game Adam got last night from Ezra at the kid's Christmas gift exchange (thanks Laurel - totally brilliant! Isn't everything a card game suddenly?). His new injections were Vincristine, Zofran, and Dexamethasone. He also got a spinal LP after that. Pretty intense appointment this time. You know my complaint of the anesthesia routine. It is even more unsettling this time since the drug they use is the same Michael Jackson used.... Ok, I'll stop there. But it does look like milk if you were wondering...
We came home with a 2x per day decadron (steriod, again) pill. It's not likely he will get puffy this time (but possible), and the eating habits should improve. He is barely eating pizza right now - that is just unheard of! Food Network should get its stock out of us once again :) This time we do pills 7 days on and 7 days off. After the first 28 days the meds change, but we'll let you know when we get there (I can only keep track of one stage at a time). The dreaded 2nd, but final, PEG is this Thursday morning too. Right now, Adam is feeling a little dizzy still and has a bit of nausea this time. He is happily resting on the couch watching Diego. Should be a quiet afternoon, but not sure what the next few days will look like. I'll try to keep you posted.
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