2007, May 16 Update

Okay, all, sorry for the delay in the posting since our return to Peoria. Lots of reasons, but most importantly, today is the first day we got our computer back online.

The trip home was awesome and easy. Brian tolerated flying very well as did all of us. The boys came back on Friday to Peoria with Memaw and Papa. It was kind of anti-climactic. They were a little leery of Brian at first and Gavin asked him why he had to dress like a pirate (Brian wears a bandanna over his head to hide the wound). They liked looking at Daddy’s owie and have no problem talking about Daddy having his head cut open. Almost to a fault. They are settling pretty well. I thank God that he gave us two so close together (you would never have heard me say that two years ago). They are so good for each other – a full time playmate, a best friend, everything. They are starting to understand the rules here. Poor things – they had to get used to rules at home and then at Memaw and Papa’s and now here. The best part of being here, though, is that there is a huge yard, safe street and a few kids close enough to their age to play with. They are happiest from 3:45 to bedtime when they are outside playing with their new friends.

Our household goods arrived on Monday already. Caterpillar has been so awesome and the whole Edmonton team has been a dream in making this so easy for us. Anyway, most of our goods went into storage, but we put some things aside for priority –that we could get to right away – sporting goods, clothes, my computer, and THEIR BIKES. So, the boys have been riding bikes and scooters non-stop when outside. They are so active. And I have my van and my computer – my two touchstones - so I feel connected and alive again. I didn’t realize how much I needed some familiarity and comfort, too. Brian even commented today on how much I seemed to be digging having my van back.

We are starting to reconnect with some old friends. Some of our nearest and dearest friends have moved since we were here. That is a bummer, but gives us places to visit. It is good living here with Ed and Jan as they have a treadmill, so I can run. They are retired and are helping with rides and babysitting during appointments. Speaking of that, here is what is going on with Brian:

He was very fatigued (still is) after the ATO drip and cyber knife. Lots more rest needed. He had his PT evaluation on Friday last week and didn’t do any exercises since it was all evaluation. Then he had another PT appointment on Tuesday, but it ended up being more eval. Bummer, since he is ready to start getting things back. He exercises at home, but not like he would if he had recently been working with a specialist. His speech eval is Thursday, May 17, and he has another PT appointment. He has his Occupational Therapy eval on Friday and a speech and PT appointment. So, it is getting started. Unfortunately, as we said, he is tired from recovering and everything just taking so much effort to do. On top of that, he starts chemo tonight. So, the fatigue may be too much for his schedule. We are going to try to schedule 4 days of 2 treatments each for the first few weeks instead of 3 days of 3 treatments each. PT said they will give him an at home plan that he needs to do twice a day, too, in order to get the most of his recovery. No one really says exactly to what level they expect him to recover. Here is his status: He is walking unsupervised with a cane pretty much anywhere. He needs to sit eventually. His right foot drags sometimes and he has to think about it. He can do stairs well and has little problems getting around on a flat surface He has to be careful on uneven surfaces, but he even walked on the grass today when we took the boys to the driving range. His right arm has a longer way to go. This is the most troubling for his self-sufficiency. He needs his left hand in order to hold the cane so his right hand has to do any holding of objects if he is going to carry them. He can grab things, but can’t hold on all the time. Things drop or he just can’t get the right hold on them. So, we got him a medium sized hipbag/backpack with drinkholders to help out. His speech is hit or miss. He can carry on a conversation, but he stumbles over lots of words and it gets worse when he is tired or when he tries to talk faster. He can’t talk at regular conversation speed. This is very frustrating for him. He just wants to carry on a conversation regularly. We are patient with him and tell him to slow down, but I can see other people sometimes get uncomfortable. That is our request right now. Be patient when talking to Brian. Don’t finish his sentences. Remind him to take his time, too.

He had his oncologist appointment on Monday, May 14. He was in agreement that starting with Temodar is a fine idea. We did not stop Temodar because he was not responding. We stopped Temodar because he was so responsive and it had been two years with no active tumor. So, we are hopeful, and we are praying and that this helps to shrink and kill what is remaining. The oncologist reiterated that the hardest part is going to be determining what is cancer growth and what is radiation change. So, we will have a challenging diagnostic road ahead of us. Temodar is a pill that Brian takes at night. He takes an anti-nausea drug an hour or so before the chemo and then he wakes up in the middle of the night to take the chemo. It sucks, but in the past he tolerated it pretty well. He would get sick the first day a time or two. Getting sick right now will be challenging since he can’t easily stoop down to the commode. So, we have a bucket for him so he doesn't hurt himself if he is nauseated.

Well, that is a lot of information, I know. I actually kept it shorter than planned, too. I could babble on and on like most of you know I can in person. Anyway, we are doing okay right now. The only thing that is feeling overwhelming is taking care of errands like – signing up for a cell phone, getting Gavin registered in school, visiting Grant’s school, getting them in a summer activity, dinner, bank, etc – and then helping Jan with the weeds that have taken over the flower gardens here at her house. It may get pretty busy soon, though, when Brian starts a 4 day rehab program. Lots more running around - hopefully between Ed, Jan and myself, we can handle all of it, but it may get overwhelming.

KEEP BELIEVING

Brian, Angie, Gavin and Grant O’Neill

P.S. I still love to read all your comments, but you can also email us at home: