March 5, 2014 Since I last wrote an update we have had a relatively uneventful couple of weeks. Jon has been to speech and occupational therapy down at the Rehab Institute near Barnes-Jewish each week. His last appointments were the final ones scheduled and he is now on his own exercising his mind. I dont think he will have a problem keeping sharp as he does DS brain games, word and number puzzles, and of coarse he plays complex board games with his friends as often as he feels up to it. He continues to feel very fatigued at times, especially these days when we have to be downtown early, and have a long, full day of appointments. He still has difficulty at times with word finding in the flow of conversation and some issues with memory, like names of items, places and people. The therapists gave him plenty of work to do at home now that he is on his own and he feels it helps him learn tricks to compensate. Today he had vaccine booster # 3. He tolerates them well with little or no side effects, redness swelling or achiness. He is required to wait 2 hours afterwards in case of allergic reaction and it feels so long. He either naps, as he is frequently energy drained by then, or we play small games we have learned to bring along. The next vaccine booster will be in about 5 weeks so he gets a nice little break till then. He will have another MRI just prior to this appointment and as always we hold our breath that there has been no new tumor growth. In the meantime he has appointments with the neurologist who regulates the anti-seizure meds, as well as an appointment with his surgeon. Jon has had problems with swelling and puffiness on the left side of his face, especially on waking each day. I assume this is from post surgical changes with the circulation in the area of his incision, so we will discuss this with him. Jon will begin his monthly chemotherapy 10 days from today. It is the same medication that he took during his radiation, however it will be a little more than twice the dose he took earlier. He will take it for 5 days in a row then be off for three weeks. He tolerated it fairly well during radiation so we hope he will feel alright with it at the increased dose. In the next few weeks, we will be having family visit from Memphis and then plan a brief trip down to see Gma Reger. We havent seen these folks in quite some time and have a lot of things to catch up on. Things are going quite well. We are thankful for all of you out there who are pulling and praying for Jon, it sure seems like it has really helped.
Posted on: Thu, 06 Mar 2014 04:36:56 +0000
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