2007 April 28 Update

Another note from Angie today. I just want to thank you so much for all of your comments. It is funny. I checked email today more thoroughly than I have been able to being back in Canada. So many people tell me they check the blog so often just WAITING for any word or news. When I am in California, it is hard for me to post more than once a day and that is probably good because some days so much changes and transpires in one day that it is good to get it filtered or summarized. What a whirlwind you would all experience if you would have to work through every change that happens each day. Funny, though, because just as expectantly as you await my blog, I await to read the comments posted. Thank you so much. There is a computer on the rehab ward, so I thought on Tuesday when I get back, I will show Brian all the comments. Anyone who wants to send him a word should post a comment and he would appreciate it, I am sure. Also, you can most certainly send him a card in the mail. He is at Stanford University Hospital. You can google the address in Palo Alto California, in unit C-1 - Comprehensive Inpatient Rehabilitation Unit. Room C111 - but rooms can change so easily.

It is good to be back in Canada and see the boys. They are playing outside right now, but I thought I owed it to everyone to post something soon. Lots happened again yesterday, so I will write about that, too. I spoke with Brian earlier and his phone conversation skills were great. I know to be patient with him and tell him to slow down, but we talked for several minutes. I miss him terribly already, but he is in able hands.

With Jan in irregular rhythm and Brian needing help and it being the weekend with not as much therapy (but not as many docs popping by either), I was so distraught about leaving. In the end the reasons are quite selfish. I could totally come back in two weeks when everything settles, more but that would be even MORE time away from the kids and by the time Brian gets out, it will have been about 3 weeks. I can't bear to think of leaving them again to come up here and take care of things. So, selfish, but I really felt I needed to do it and Brian did, too, or so he said. I wanted to be the one to start preparing the boys for Brian's condition. I was just so worried about Ed and Jan feeling they had to always be there and handle the filtering of information, etc. by themselves. I did not feel right about leaving and I just so badly wanted one of Brian's family members to come out and stay while I was away. How do you ask for that, though, when Ed and Jan didn't even think it necessary? So, I didn't even pray about it. However, on Friday morning, Ed and Jan said that JoAnn and Jim, one of Jan's sisters and brothers, were coming regardless. I was ecstatic and feel as though I can so much easier rest here and enjoy myself. I am thrilled even if they felt it was unnecessary. I was reminded of how God knows the issues and trials of one's heart even if we don't verbalize them. I feel so blessed and humbled.

Well, here is what happened yesterday. In Occupational therapy, Brian was able to open his fingers. So he was grasping objects and able to let them go. It is all he has in them to do this task, but he is doing it. They gave him some great things to do in his room while hanging out. He is still not sleeping well, so mornings are not going great. His speech is getting better each day, but it is slow. He tries to talk like Brian always has (naturally), but Brian has a rather diverse vocabulary. So, he is trying to say 4 and 5 and 6 syllable words when he could easily subsitute a 2 syllable word. He said, it would be easier to speak if he were dumber. That is Brian for you. Always witty! In Physical Therapy he did more walking with a cane under close supervision and more squats. His biggest problem is either locking or having his right knee too bent and then losing his stability on that leg for taking a step with his left leg.

Just when we thought the decisions were made for the cyberknife and ATO followed by chemo when we retun, the board met yesterday and it was thrown out that maybe additional conventional radiation is an option for Brian. Radiation posed well for Brian in the past in the sense that it killed lots of cancer cells, but it also necessitated a surgical resection of that area. After what Brian is going through right now, I would say that another surgical resection is out of the question. My concern is how much healthy brain is left and how much more can we radiate without starting to impact what makes Brian himself. So, they are supposed to talk to us about that in more detail next Monday. Supposedly, we will still go forward with the cyberknife next week anyway. Thank heavens there will be additional ears to hear it.

Also, the rehabilition team came up with a discharge plan for Brian. The plan is discharge on May 8 (give or take depeding on how he does the next week) The goals are these:
Physical Therapy: Brian will be able to walk with an assistive devise and supervision 100 feet. He will gain strength and balance in his trunk and legs. He will be able to independantly, with supervision, transfer himself to and from any surface and to and from bed and bathroom. Brian will be able to maneuver a flight of stairs with an assitive devie (cane/railing) with supervision. (basically, by May 8, he will be limited ambulatory, but not alone)
Occupational Therapy: Brian will be able to independantly handle all toilet needs (already doing so, but has railings/handles right now). Brian will be able to independantly handle changing and sink needs (changing is good now, sink needs are good unless it requires two hands). More talk about his abilities with supervision to handle transfers in and out of vehicle to and from chair or with cane. A little talk about some increased strength and use of his right upper body, but not as much as we would like. - I would like to see some things about buttons and zippers and ties.
Speech Therapy; Brian will continue to improve his phonetics and clarity in his diction and his concentration and problem solving skills.
Recrational Therapy: Brian will be able to participate in community and personal recreational activites at a modified level. brian will need transportation assistance (chair) for community activies require more than a 100 foot walk.

Brian is handling the chair quite well. It, of course, absolutely sucks, but it is what it is and he is taking it in stride. Brian's biggest issue right now is fatigue. He is very tired. He does well during his 3 hours of therapy each day, but he is very tired all the rest of the day. Partially due to not sleeping well and partially due to everything else his body is going through. Unfortunately, the ATO and cyberknife he is having next Wed-Friday are going to exaserbate this problem. I would imagine the May 8 discharge date will move if Brian is unable to perform some of his therapy due to fatigue.

I have talked to the boys about Brian and his situation in more detail now. I have explained that the doctors didn't get all the sickness out of daddy's head, so I have to go back to California and daddy has to stay for a little longer to try to get better. I have explained to Grant (we had some alone time this morning) so far that Daddy's right arm and hand don't work very well right now and he needs help. I explained that Daddy's right foot and hip don't work very well, right now, so walking is hard for Daddy, but he gets to ride around in a cool wheelchair. I have explained that Daddy's words don't always come out so good and sometimes he sounds funny, so we will have to read books to Daddy instead for a while and we will have to help daddy remember how to say his words. It will be fun, I told him. I told him Daddy is still very good at explaining how to play their video games and he can push one side of the buttons while Grant pushes the other. I said that Daddy is very good at watching them play and Daddys lap works very well for sitting in to talk and watch movies or whatever. Grant said, "this leg doesn't work?" while pointing to his right side. I said, "yes, not so well right now, but it does a little" He said, while pointing to his left side, " but this one is very strong?" I said, "superman strong.". he said, "Maybe he could just hop around on one foot like this." And he proceeded to hop around on one foot for me. I just smiled and said, "I am not sure if daddy can do that or not, but maybe you could try to teach him." Kids are beautiful.

Anyway, that is enough for today. I will try to write tomorrow.

Keep Believing

Brian, Angie, Gavin and Grant O'Neill