Monday, June 25, 2007

June 25 Update- O'Neill family

June 25, 2007

One month later….

Brian has been rehabilitating several days each week. He is making good progress in all three categories – speech, physical (lower body) and occupational (upper body). His weakest part right now continues to be his right hand. However, he is gaining some pinch and grasp capabilities. Brian underwent his first round of Temodar in Mid-May after we got back. He was extremely tired and kind of crabby that week. However, within days after, he was doing much better. He even went away for a fishing trip with his dad and brothers and a nephew in May. He had a great time and made more progress with his hand and fingers in that week than he did in therapy the past month. Lots of grabbing and holding with fishing, baiting, reeling, etc. It was encouraging.

The boys and I are keeping busy. We get together with friends here and there. Most of the day is spent with our doing whatever or going wherever to keep them occupied, but in the end, I am not enough of a friend for the boys and the ages they are right now. They want to be around other kids their age, and it is hard to do in the summer when we are not in our own home yet and we are not in regular activities, except golf which is not instructed and makes me realize that I am NOT a coach. We have gone swimming several times already this hot summer. We are adjusting to the heat, but it makes my work-outs not as motivating. I can’t run very well in his sun and heat. We have been to the house several times to look at things, make some decisions and evaluate our goals. We are going to make some changes to the house, but are trying to decide what we can or SHOULD afford to do, etc. Our tenants have turned the keys over to us and the house is in great shape, but we have painting and some other modifications we want to do before we move in. I have been running around like crazy for the last several weeks getting estimates, samples, ideas, prices, etc. It is so much work just to get it all planned, let alone to do it. We are painting ourselves and have some help for the modifications. Anyone interested, please let us know. We are starting to paint this week.

Brian just bought a Ford F-150 Quad cab truck. He loves it and we took it to Perryville with us this past weekend for my nephew’s graduation party. Brian was quite proud of it. He got to do some more fishing, too. He even managed to find some time to fish with the boys.

Brian had his first round of tests after the first round of chemo, and we got results last week. The results were skewed by the fact that the doctors here did not bother to compare to the scans and tests we brought back with us from California, which should, in fact, be his new baseline. They compared to the scans last performed here, which was before surgery. So, it was a bit of a joke and it really makes me boil. Mostly because when I first tried to get Brian in to the doctor as soon as we got back, they said, “oh, we need to have all his information from his stay there, etc.” Then, they didn’t even use them when looking at his progress. Anyway, we sent them to Stanford as required by the protocol, and we hope to hear their assessment this week. Who knows, though. I am sure we will have to call to hear anything. I am so tired of taking care of things like this – faxing, mailing, calling, copying, etc. I hate it and I begin to resent it sometimes – especially when I find out my efforts were not even utilized.

Anyway, Brian underwent his second round of Temodar this past week and finished up on Sunday night. He is more tired today. Seems to be a repeat of the last cycle – more fatigued towards the end of the cycle – hoping he feels better by the middle of the week. He hopes to go back to work within a month or so. He is getting bored on days that he feels good – but with therapy 2 hours a day 4 days a week, and with speech still a bit of a struggle, we think he needs a bit more time.

Still struggling spiritually. Myself, I find I am very angry and full of self–pitying questions. I have not been good about my daily time in prayer with God. I know if I got that part of my life in order, the questions would probably get answered and the anger would subside. I don’t cry much anymore. Fathers Day was kind of hard for some reason.

Anyway, that is about it from here for now. A little glimpse into our daily lives right now. Busy with the house, busy with therapy, trying to keep the boys busy enough without killing them, busy with errands, probably just staying a little artificially busy in order to not stop and think.


We are now getting mail at the “old house” as the boys call it: The boys got postcards from our neighbours in Canada today and they carried them around ALL PROUD all afternoon.