THANKFUL

I love Thanksgiving. It is one of my favorite holidays for many reasons. First of all, while living in Canada, certain dates became a sense of pride to me. Memorial Day and Independence Day and Thanksgiving were just another day to Canadians. Sure, TV was different because over half of what’s on in Canada is the American major broadcast and cable stations, but little else reminded me of the State-side celebrations. School was in session; people worked and just carried on like any other day. Canadians have different holidays. Victoria Day in May, Canada Day in July, Canadian Thanksgiving in October. Their biggest shopping day of the year and equivalent to Black Friday (day after our Tgiving) is Boxing Day – December 26th. Stores take no returns that day due to it being such a large SHOPPING day. It is a national holiday in addition to Christmas Day. Anyway, of all these lost American holidays, I missed Thanksgiving the most. Perhaps because Victoria Day and Canada were so close in proximity to the American counterparts of Memorial Day and Independence Day. Also, they involved cookouts, get-togethers and fireworks much like our holidays. However, Thanksgiving in November just came and went. One of our two years in Canada, Brian even traveled over the American Thanksgiving holiday. The next year, he took off early, and we watched football and lounged around as you are supposed to do on such a holiday. However, it never felt like the Christmas season officially started and it never felt quite right. I missed Thanksgiving and I am really looking forward to celebrating it with my family again this year.

Another reason I love Thanksgiving is it is a no-rush, no-hassle, no-expectation holiday. It is the way God intended for holidays if God would have created holidays. It is a time to just BE. It is a time to spend with our family/friends without gifts and material things clouding what it is about. We have been trying to teach the kids why Thanksgiving started – Pilgrims coming over hundreds of years ago and making peace with Natives – trying to share the land and harvest. We talk about it at dinner and they usually start playing under the table when the topic comes up. Not interested. I just don’t want them losing why we started this holiday the same way I don’t want them losing that Christmas is about JESUS’ BIRTH; not about Santa and not about presents. I don’t get quite as upset if they don’t quite get what Thanksgiving is about versus Christmas. I can’t let them lose that. (I often wonder why we still do the whole Santa thing based on the focus getting skewed, but we do, so I will blame myself – gives me blog fodder) Back to Thanksgiving: I love that we get to have 4 days off work and school without any expectations. The kids don’t even care about the meal. Gavin’s librarian dismissed the kids the other day to start checking out the books in this order: “If your favorite part about Thanksgiving is watching football, you can look for your book. (a couple boys got up) If you favorite part about Thanksgiving is Turkey, you can get your book. (a few got up) If your favorite part about Thanksgiving is the vegetables, you can get your book. (a few more got up) If you favorite part about Thanksgiving is the pumpkin pie, you can get your book (the rest got up except Gavin, mostly because they are Kindegarteners and just wanted to be the first to get the Princess I Spy book)” Gavin, being quite honest, just sat there waiting to hear something he likes. She said, “All right Gavin what is your favorite part of Thanksgiving?” To which he replied, “HOT DOGS.” She didn’t want to let him get up. Good thing I volunteer so I could assure her that he is exactly right: he doesn’t care about any of the others, and he probably WILL eat a hot dog.

One more reason I love Thanksgiving is I love being reminded to be thankful. I try to be thankful all the time, and we start each boy’s prayers at night with a prayer of praise and thanksgiving before asking for our own requests and forgiveness. But I love being reminded in new ways to thank the Lord. Last Sunday, at church, we had our Thanksgiving message. We were reminded by Pastor Cal to be thankful even when in ‘deep weeds’ through the story of Jonah. Jonah, after complete disobedience to God and finding himself in the belly of a big fish realized the importance to start faithfully praying in Thanksgiving to the Lord, BEFORE BEING DELIVERED. WOW! (Check out their website if you want to listen to or download the message) I would say that Brian’s diagnosis of a Grade IV brain tumor (I still LOATE that word) could be related to being in the belly of a big fish. However, staying focused on our Source and not our circumstances can help us to remember to be thankful. Circumstances are always changing and faltering, while our Source is constant. Circumstances don’t define our outcome or us; our Source does. We can be reminded and assured that with faith and obedience in our Maker, we WILL live all the days on this earth that He has for us to fulfill His purpose in our lives, and He will take us when that is through. I can’t comprehend that His purpose for Brian would be anything but seeing his children grow up and being there for them guiding them, leading them, directing them, etc. It is important (and AMAZINGLY DIFFICULT, I might add) to practice and live a life of faith and thanksgiving BEFORE we receive deliverance and relief. So, I choose to pray in Thanksgiving for the awesome power of my God and for his faithfulness to us even when we are in the belly of a whale.

I hope this Thanksgiving holiday you can be reminded of your blessings – all you have to be thankful for. Moreover, I hope you can find a few moments to reflect on those things and shoot God some thanks and praise for his faithfulness in your life.

KEEP BELIEVING
PS. I will be at my parents this Thanksgiving Holiday for several days. Since I think they are the last two remaining breathing humans with dial up service, I choose NOT to post blogs from their house. I choose to just BE - with my family, with my kids, with nature and with whipped cream topped pecan pie.

New Blogging for Angie

I have decided after spending too much time reading other people’s blogs to start treating my blog the way they were meant – a chance for me to vent and soapbox several times a week about whatever I wish while giving people an odd, eerie inside look to the everyday goings on in our lives realizing I am essentially airing dirty laundry for millions to view. How exciting – gives existentialism a new meaning. I will update more regularly about the mundane ins and outs of our lives for anyone who wishes to read- our spiritual ups and downs, our every day funnies and worries, and just how it is to be us. You can stop here if you don’t wish to hear the verbal diarrhea that is about to follow my new philosophy on this blog.

I am doing this for three main reasons. First of all, I don’t want to email updates about Brian’s health, as it is a large pain for me to do so. That is why I created the blog in the first place. Then I became lax about updating it, thinking people didn’t care or want to know what is going on with us if there wasn’t something major – a test or a doctor appointment coming up. Then I realized that NO ONE was checking the blog anymore since I wasn’t updating it on a regular basis. So, no one knew if something major WAS going on unless I emailed. So, to ensure that you will check it when there is something major, I am going to try to write something at least several times a week – no matter how trite – just to keep your attention, or at least, your curiosity. I thought the theme of my blog would be something like this – what it is like to live a normal, family of 4, suburban life in middle class Midwest America AFTER your husband has lost some of his basic capacities on the right side of this body WHILE having a life-threatening brain tumor constantly threatening your existence. – short, catchy, and up-lifting, eh?

The second reason I am doing this is to keep kind of a memoir for myself. I am doing it for my boys and for my family. It is a way for me to capture in cyberspace immortality the silly, serious, goofy, problematic, troublesome and fun things that we do, say and go through everyday as a family. So, just to get my point across, I don’t care too much if anyone reads this or not. You do not hurt my feelings. I have my own selfish motives regardless of popularity.

The last reason I am doing this is that I LOVE TO TALK! I love to say lots and lots of words. I cannot type as fast as I talk and I have to think more before I type, so this is a way for me to talk to myself and mentally edit before writing down so no one thinks I am crazy. It is also a way for me to learn to organize my thoughts a bit and hone my writing skills by using fewer words than my mouth wants to use. In the same way that I glaze over when Brian tries to explain what the mechanic did to fix the car, Brian and the boys glaze over when I try to talk to the extent that I WANT to talk. This way, everyone wins.

So, stay tuned if you wish. Every once in a while, I will keep you apprised of Brian’s health, doctor’s appointments, results and our prayer requests.

KEEP BELIEVING

Angie

By the way, if anyone wants to know one of the blogs I check regularly, here is my good friend, and old college roomate, Heather's witty, creative blog about rasing young boys: 3boysundermyroof.blogspot.com

O’Neill Update 14 November, 2007

O’Neill Update 14, November, 2007

Well, we are back from Europe and I THINK, over our jet lag. If 11 hours of sleep last night doesn’t alleviate the jet-lag for me, I don’t know what will. I woke up this morning and knew where I was and that was much better than yesterday when I startledly awoke to a little boy in bed next to me and instantly thought I was being assaulted by some strange Italian man, only realizing that it was Gavin, whom I apparently invited in. That is what exhaustion does to you.

Anyway, just to let everyone know, a few days before we left for Europe we heard back from Stanford and they said they thought the results of the scans were stable from the last scans. So, no shrinkage, but no progression, either. That is pretty good news. Brian continues to do okay. His right hand seems to have perhaps lost a bit of its dexterity. He walks slowly with a significant limp, but he walks. His speech is about the same, some days and hours worse than others. He is working most every day, now. He goes back to the doctor this week and will start chemo again this weekend.

On the home front, Europe was amazing. We had a marvelous time enjoying the sights and sounds in London – riding the tube (subway) to get around town, visiting Westminster Abbey, Windsor Castle, Tower Bridge, Burrough Market (seeing where Bridget Jones lived), taking in a London West End theater production (London’s equivalent of Broadway), etc.; and of Paris – riding the Metro (subway), trying to speak the language a bit, enjoying vin rouge (red wine) bread and cheese and onion soup (they don’t call in French Onion Soup since the French is assumed when you are in France) and pastries and crème brulee, visiting the Eiffel Tower, the Louvre, The Arc de Triumphe, Notre Dame, Montmarte, Sacre Couer, and the Champs Elysee, and simply romantically enjoying one of hundreds of street side cafes watching the world go by; and then Rome – seeing the Vatican, the Sistine Chapel, St. Peter’s Basilica, the colleseum, the amazing Ancient Roman remains of buildings, the vast number of churches, being present for the Papal Blessing on Sunday, enjoying vino rosso (red wine), trying to speak the language, riding in the taxis with the CRAZY driving (passing cars on the left to make a right turn 15 seconds sooner and vise-versa), and on and on. It was truly a remarkable journey and one that we are appreciating even more as we look back on it and our photos.

Thanks again to Brian’s folks, Ed and Jan for a wonderful vacation and to my folks, Karen and Larry, for keeping our kids and house in perfect order.
KEEP BELIEVING!

July 26 2007 O'Neill Update - We're In!

July 26, 2007 O’Neill Update

Thought it time for another blog post. First and foremost, we are in our house and adjusting okay. It is still under construction. Cabinets are being installed as I write this. New cabinets have to come next week due to damage upon arrival. So, the countertop cannot go back on until that is resolved. The granite goes in sometime the second week of August or so. Our laundry room is not quite done – need the lockers and then have to decide upon shelf placement after that. Still need a shelf or two in the master bedroom closets, too. Due to kitchen construction, we have a few boxes we still live out of in the kitchen. The bedrooms and the rest of the house are almost completely unpacked and put away. We can even park both cars in the garage. Not too bad for being in the house for just two weeks and for making two and a half weeks worth of renovations before that. Next big project will be putting a bathroom in the basement – something we all REALLY want. Grant asks us often “why doesn’t this basement have a bathroom?” as if it is the house’s fault or something.

The boys are pretty good. They fight a lot. Gavin and I are going this weekend to get his school supplies. He will start Kindergarten on August 16 or 17 and Grant will start pre-school right after Labor Day. They are bored, I think. We put sand the in the sandbox today – that will probably keep them entertained for all of about 2 days. We packed up about 1/3 of their toys and gave them to charity due to their NEVER playing with them and seeing them in a million pieces all over the basement. They were okay with it. They play outside most of the time anyway – bikes, golf, scooters, in the playhouse, whatever.

Brian is doing pretty well. He continues with therapy a few days a week – occupational and physical. He still walks with quite a limp and his hand doesn’t seem to improve too much – not much grasp or pinch with it and little strength. He tries to do stuff around the house – projects – but most everything we do these days is a team effort. He needs help drilling, grabbing, stabilizing, etc. Anything he does on his feet really tires him out because his functions are just not working together great. At therapy, he does fantastic because they concentrate on one thing at a time – one muscle group. But, when it comes time for them to work together to walk or ride a bike or do simple household chores, it is challenging and it wears him down. He keeps pretty good spirits. He just finished his third round of Temodar. The scans in June showed some shrinkage in the areas they treated with the cyber knife at Stanford. That was good news. He has another scan in mid–August and that will tell us more of how the chemo is working.

As a family, we are doing well. We have a lot of time together with Brian home. I think we all wear on each other a bit. I find myself a bit crabby and snappy. I haven’t been sleeping well and haven’t been working out. Our treadmill should come in a couple weeks. The boys and I went to Kentucky last week with family. We went to a waterpark and swam at Uncle Kevin’s. Grant pulled a towel out from under his 3 year old cousin, Logan, and Logan fell face first in the concrete, as we were packing up to leave. Logan’s tooth got knocked very loose and they are thinking there is a good chance he will lose it. It is hanging quite low. Grant pulled the towel on purpose and knew Logan was on it. He did not mean to hurt Logan to that point, but Grant does mean things without thinking of consequences. We are always working on his attitude. We are going to the Lake of the Ozarks next week for a few days with family to play and fish. Then school starts a week and a half after that. So, life goes on. Life just takes more effort these days.

Keep praying for a smooth transition for the family into our home. Pray for Brian’s continued progress with respect to his functions. Pray for Brian’s continued healing. Pray for all of our strength and endurance to keep up.

God bless all of you.

KEEP BELIEVING

The O’Neill’s

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.

KEEP BELIEVING

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.

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:

2007 May 8 Update

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.

KEEP BELIEVING!

Brian, Angie, Gavin, Grant O'Neill

2007 May 2 O'Neill Update

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.

KEEP BELIEVING

Brian, Angie, Gavin and Grant O'Neill