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.
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:
Wednesday, May 16, 2007
2007, May 16 Update
Tuesday, May 8, 2007
Hello to all. Sorry for my lack of posts lately. Just haven't felt like it, honestly. Here is what is going on here at Stanford:
Brian started the Arsenic TriOxide drip last Friday with Cyberknife to follow. He had three days of this - Friday, Monday and today, Tuesday, May 8. The side effects seemed to be cumulative - he was VERY tired today, Tuesday, and pretty darned tired yesterday, Monday. He did not get sick or have any sort of other terrible reaction. Just fatigue. So, for the last three week-days, he has been taken to the clinical research center for a 2 hour drip of the ATO and then wheeled to Cyberknife for about a one hour radiation treatment. Then he gets wheeled back to his room, has some lunch and then has three solid hours of rehab from 1 to 4. He has had to cut a few of his therapies short due to fatigue during this. Other than that, everything is tolerated quite well. One of the good things about taking part in this ATO study/protocol is that we have to send our scans back to this team here for their review for the next year as part of the requirements. So, the doctors here will still be reviewing Brian's case regardless for the next year.
We have all of Brian's major medical records faxed or in hand right now for our departure, which by the way, is TOMORROW!!!!!!!!!!!!!!!!!! May 9. We arrived here on April 18, if you can believe it!!! We are ALL SO READY TO GET OUT OF HERE!!! You can't even begin to know. Even Jan, who spent over half of the last 3 weeks admitted herself said today as we were driving past the beautiful gardens in the wonderful warm sunshine, "yup, I won't miss it at all." I had to laugh because she is so eternally positive and optimistic. To hear the faintest bit of resentment or sarcasm in her voice regarding the trip lets you know that it is TIME TO GO! The kids will be coming with Memaw and Papa on Friday afternoon/evening some time.
Brian's rehab continues to progress. He is walking with a single point cane instead of a 4 point cane now. He can even take some supervised steps with no cane. He is gaining more control over his arm and hand, but there is a long way to go. His speech comes along better each day, but it is worse when tired or when rushed. We have practiced more home exercises - stairs, curbs, cars, bathroom without railings, etc. and feel a bit more prepared for homelife. However, nothing can prepare you for homelife with kids and an active lifestyle. They have kitchens and all kinds of gadgets to play with here, but there are no simulated children climbing on you or getting in your way or leaving their toys out on the floor. So, real life will pave the way in the next few weeks.
Brian starts rehab in Peoria on Friday. He has an oncologist appointment on Monday. Right now, he will continue with outpatient rehab, for I would guess, quite some time. He will probably start chemo next week. They are recommending here (and we think Brian's local oncologist agrees) to start with Temodar. This is a chemo Brian was taking in the past and he tolerated it well and it did well for him. There is a concern that his pathology may have a tolerance to it due to having tried it in the past and the growth happening anyway, but the theory is that he has not had any chemo for 5-1/2 years, so let's try this first and see how it goes. The biggest concern going into this is that due to the cyberknife, Brian is almost surely going to have changes in his scans. The cyberknife is the high dose radiation to the the concentrated target points in the brain. So, the issue is that when the cyberknife starts to show its effects, the scans are going to change - the enhancement will probably look larger. This can be from the radiation or it can be from growing cancer (I hate that word, but I hate the T word more (tumor)). So, it will be hard to differentiate and hard to know whether or not to change treatments. So, we will work closely with the team here to get the correct scans and have additional eyes for the interpretation of the scans.
Brian's attitude remains positive. He is so ready to get out of here. He wants to see his kids. We did manage to get a pass to leave this past weekend. We went out to dinner on Saturday night and out to lunch on Sunday afternoon. He walked in and out of both those places from the car. Then we went to a beautiful outdoor shopping mall and he wheeled himself around there for a while, too. It was just nice to get outside. It was a beautiful weekend. I managed to get more running in, finished a book, got hooked on Sudoku and spent lots of time with Brian. He is started to get ornery with me, so he must be feeling better and must be having cabin fever.
That is about it from here for now. Thanks for all your prayers and support. Here is our contact information as of tomorrow. This is Ed and Jan's address until we get back into our house sometime in July:
We will get hooked up with cell phones and here is our email address until we get our own service:
Some of you have emailed me a few times, but I haven't really had time to reply yet. I will when we get more settled. Keep posting comments here, too, we like to read them.
Brian, Angie, Gavin, Grant O'Neill
Wednesday, May 2, 2007
Hello to all. Thank you so much for your comments and postings. Brian and I read through them tonight. It was great for him to hear from so many of you. He thought this whole concept was really cool and now he can come down and check whenever he wants as he knows where the computer is and what the website is.
It was great to see the kids again and some neighbours. It was very strange to leave and realize that I am not going back. It makes me very sad to leave as we loved it there and it is not the terms on which we intended to leave. It is actually heart-breaking. We will miss it dearly and I know it devastates Brian to leave this portion of his career like this. He truly was loving what he was doing. The boys are excited about moving. Gavin is finishing school this week. Grant finished today. Everyone hugged him and he said, "mom, some girl even KISSED me." Mom said it was very cute. I think Mom will be ready to go home, too. Dad arrives today to help mom for a couple of days and then help get the kids to Missouri on Saturday. I think the "honeymoon is over" with mom and the boys and they are starting to show some of their true colors with some sassy mouth and some naughty behaviour. They will be at mom's for about a week. We will leave here probably Wed or Thursday next week and get Brian settled back in Peoria for a couple of days before we bring in the cavalry.
I arrived back in California yesterday morning. Doctor Edwards came by and said he is pleased with the plan drawn up for the cyberknife treatments. However, there has been a delay in getting the ATO (Arsenic Tri Oxide) and the cyberknife will probably not be until Friday, Monday and Tuesday. SO, we are delayed right now. We don't know if it will happen those days or not, but we should know tomorrow, Thursday.
Brian's rehab is going great. He has already surpassed his PT goals - he is walking about 150 feet with a cane and supervision. He ascended and descended a flight of stairs today with supervision. In PT and Occupational Therapy (OT), they did a lot of family training. They showed me where to stand and how to stand and what to help Brian with to maintain stability. They showed us how to get his chair on and off curbs. We looked at pics of the house and went through where problem areas were going to be and how to handle certain issues. I feel better about home now, but still have concerns about how to handle everything when real life with kids hits. Brian's hand is getting stronger. He is opening his fingers better and able to clumsily grab some smaller objects and turn them over and back. His arm and hand have a long way to go, though. His stability is getting really good and speech continues to come along well. He carries on conversations, but has to talk slowly and really think about certain words or say them lots of times to get them out properly. His speech therapy is migrating to more concentration, attention span, problem solving skills - crossword puzzles, word games, deciphering codes, etc. It is fun to watch and participate and learn in all of this. he plan is still to discharge Brian on Tuesday, May 8. Brian will continue with out-patient rehab when we arrive in Illinois.
Jan is out of the hospital again. On Friday, she had an angiogram that was normal, so, they got her heart rate down lower, still in A-Fib, and released her on Saturday. On Sunday morning at 2:00, several hours after she was discharged, she was bleeding from where her angiogram had been and wouldn't stop. She went back to the ER and was immediately admitted. They could not get an IV started, she was losing blood fast, it was leaking back into the groin/leg area where the angiogram was performed, and her blood pressure started to drop. They called in the rapid response team and they finally got her stabilized and in the midst of all that, she went back in normal Sinus Rhythm. So, we are teasing her that when her heart misbehaves, she just needs a near death experience to get back into sinus rhythm. Turns out the problem was that her blood was too thin from the blood thinners and they had to spend the last couple days getting it to a healthy level. She was discharged yesterday and is doing a good job taking it easy and being smart about everything.
Anyway, I am trying to take care of myself, too. Last night, I finally slept for about 10 hours. I haven't slept more than about 6 hours (and many nights as little as 3 or 4 hours) since Brian was admitted. I stayed in Brian's room and was even able to sleep in the hospital. I was exhausted and needed rest like I didn't even realize. It got up and went for a run this morning in the light misty rain of Palo Alto on the Stanford campus. It was pretty nice.
Brian is starting to go a bit stir crazy. He wants out - it is like being trapped. He is sick of the food and we are both sick of the cafeteria as an alternative. We get outside for a bit every day, but it is still just sitting around. I called him out on his crabbiness today and said, "Brian, even when we are home, we have to come up with things to occupy and keep you busy that can be done sitting around." We determined that is his biggest issue right now. He is tired of sitting and would like to walk more, but only walks about 20 minutes a day in PT. He is going to talk to his physical therapist tomorrow to see if we can get clearance to walk around the halls a bit more for Brian to gain some more strength.
That's it for now. Probably won't write again soon unless Brian's cyberknife changes.
Brian, Angie, Gavin and Grant O'Neill