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

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

2007 April 25 ONeill Update

It's Angie again. This time from the hospital. I am spending the night with Brian again tonight. I am not spell checking this, so it may be pretty bad.

Brian is progressing pretty well. His speech seems to get a little better each day, but nothing near the progress he made the first few days of therapy. It is slow going from here. Same thing with his leg/foot and arm now. It is slow going. He moves it and gets it a bit stronger each day. The hand has me most concerned because the fingers still have not spread out or stretched out on their own. However, he makes progress each day. He can get around the wheelchair quite well. He is shaky on his feet due to his right calf and foot not working properly. However, today, he walked the length of part of the corridor with a handrail - shaky and weak and slow, but he did it. Then he even walked part of the way with just a cane. So, the goal is to have him able to do stairs as stairs is not an option no matter where we go to at least get into the house. He is doing well, but he is frustrated since he wants it to go faster now. The swelling in the brain is probably down now, so the stuff that was going to come back quickly is back, the rest is true slow rehabilitation. They can't promise or guess what he will get back due to not knowing what is a result of resection versus just what needs to be rewired.

Anyway, as far as treatments. We are entering a clinical trial called Arsenic Tri-oxide (ATO) with cyber knife. They are treating two small areas left behind with the cyber knife. The ATO is supposed to act as a radio-enhancer making the radio-surgery more effective. It is an early trial - Brian is only 12 of 12 having it in this phase. The good thing about the trial is that ATO is FDA approved for leukemia, so it is used on people and has been for a while. However, he will get way less than the leukemia patient would. So, it is not like he is only 12 of 12 people who have ever had this at all. Just in conjunction with the radio-surgery. The radio-surgery is something we were going to do anyway, so we thought, why not throw more at it. Dr. Edwards thinks it is good to throw anything at it that it hasn't already seen and has maybe built up an immunity to. So, the planning phase is going on now - scans and the doctors have to do some programming, then it will be administered on Wed-Thursday May 2-5. It consists of a 2 hour drip of the ATO followed by cyberknife. He will still have rehab, too. Side effects - fatigue, headache, nausea and a possible QT extension on his EKG which has happened with other patients, but corrected with some electrolyte boosts - magnesium, potassium. We will follow with chemo when we return to Peoria.

Anyway, Jan is back in irregular rhythm. They keep saying she is challenging. They are giving her lots of stuff to keep her pulse down, but they are also giving her Lasix (a diuretic) to keep the fluid from building up. Frustrating on that end, too.

I am going back to Edmonton tomorrow for a couple of days to tie up loose ends and see my kids that I miss so bad I can hardly stand it. I am going to close things out as much as possible, see some friends, say good-byes and then head back here on Tuesday for Brian's treatments the next week. I don't know how long we will be here. We will probably let him finish his in=patient rehab here at this point assuming it is not one more week past next week. My mom and Dad are taking the boys home NEXT weekend (first in May) with them until we get Brian settled. I have to spend the weekend explaining some of what is going on and some of how Brian is so they are slightly prepared. Brian is afraid he will scare them.

So that is all from here. Have to go, missing "The Office".

KEEP BELIEVING!

Angie, Brian, Gavin and Grant.

2007 April 24 Update

April 24 Update

Okay, so this is Angie today again. Thank you again to Mindi who is finding the time and words to write when I am in too much pain to find the correct words. Last night can be described as nothing short of pure anguish, heartbreak and despair. I have never felt such amazing sorrow and agony in my life and I pray I never experience such emotions again. And the pain I feel/felt are a fraction of the emotions Brian feels/felt. Brian and I know the challenging road that lies ahead. We lost several acquaintances along the way to this same pathology. There, that is said, and now we are done with it.

I told Brian last night that I didn’t know it possible for a person to help another experience the happiness and joy he brings to my life. I told him life with him, sick or well, talking or not, walking or not, is so much more full, complete and beautiful. I can’t comprehend life without him and I refuse to do so. I am not giving up on him and I WILL NOT let him give up on himself, but that didn’t need to be said. Brian needed to grieve last night (don’t get me wrong, we are still grieving) but Brian never gives up. I told Brian I don’t know why this is our cross to bear, but the fact is, it is. I choose to lay it down and not carry a heavy load every day. Christ can carry that for me. He offers to do it for me and he did it for me on Calvary. Every new day we have together and as a family is going to be spectacular. I pray for 60 more years of spectacular, but no matter the time, it is going to be nothing short of spectacular. We will not give up hope and we ask that everyone else please continue to maintain your faith, hope and your positive attitude. Brian needs no tears, no sorrow, and no pity right now. He needs strength, prayers, support and love. For some reason Brian has been chosen to have to fight for everything all the time – to speak, to heal, to walk, to live. We need fighters surrounding us.

So, here is where we are today. Brian and I woke up very sad and tired. Brian had a private room and I finally got to stay the night, though I spent most of the night crying and feeling very alone. Then, PT came and he was able to do some lifting of himself off and on the bed to a standing position and a couple of shuffled steps. He has to learn to trust his right leg. His quad and hamstring are good, but the foot is not great. It is coming along, though. Today he was able to point his foot pretty well; flexing it is getting stronger every day. His right arm and had still just lied limp at his side making balance difficult, too. His speech is coming along so very well that the speech therapist put away her sheets and just carried a conversation with him. Brian can totally understand everything said, and knows exactly what he wants to say, but the words don’t come out fluently. But the fact is, two days after all he could say was “well” or “yeah”; he is carrying conversations- albeit sometimes jumbled and difficult to understand. Then something else happened.

The nurse came in around lunch and just checked his functions again. She commented on how much stronger his foot was getting. Then, she tried the “squeeze my fingers” test with his right hand. He said, “I can’t”, She said, “just think really hard and try” He took a deep breath, grimaced and his fingers started to curl!!!! I said, “Baby, look at your fingers!!!!” Then, she said, try to lift your arm. “Nothing” he said. She said, "just try really hard." He grimaced again, took a deep breath and lifted his arm about two then three inches off the bed. I said “LOOK AT THAT! LOOK AT THAT!” I started to tear up, Brian started to tear up, and the nurse got teary eyed and said “you got me, too.” It was so awesome. By the end of the day, he was able to get his arm up to about chest level and move his wrist, too. His fingers are still barely moving, but it is amazing!!! Praise God. It was so motivating for Brian.

He got moved to the rehab floor today. He will get an hour a day of each rehabilitation: Physical therapy, speech therapy, and occupational therapy. His full time job is now to work out and get strong. He keeps telling me in his best Arnold voice “BUFF.”

We are STILL working to get the radiation oncology records to Edwards from Colorado. Please pray for that situation. If my God can create the heavens and the earth and raise from the dead, then I KNOW he can help facilitate the transfer of the appropriate records between two medical facilities! There was a suspicious area of enhancement left behind unable to get to during surgery (they are assuming it is tumor) that they want to treat with Cyber knife. Here is a link to cyber knife technology if you want to check it out. http://www.cksociety.org/PatientInfo/radiosurgery.asp The area is small, but given the pathology, we want to be SUPER aggressive in treatment. They amount of radiation Brian can receive with Cyber knife is totally dependant on how much radiation he had in Denver. So, WE NEED THAT information! If Brian has Cyber knife (which they know he can, but they can’t develop a plan without knowing that history), he will stay in Rehab here during that. Cyber knife is outpatient linear accelerated radiation. So, he would go for treatments and come back for rehab. We would be here through next week. If he does not have cyber knife, we will probably arrange for Brian to go to inpatient rehab in Peoria and head home. They don’t know how long he will be in rehab and I worry about how long it will drag out and how long we would stay here. We have to go home at some point in time.

Another next step: The neuro-oncologist is coming by tomorrow to talk about a chemotherapy plan for Brian. Based on his chemo history, the options are getting limited, but we will see what he has to say. We, once again, want to be as aggressive as possible.

Jan had an interesting day. She is still admitted and was being monitored for her A-fib heart rhythm. They were giving her medication to try to control her pulse and to get her to come out of A-fib. She got VIOLENTALLY ill and started to have her lung fill up with fluid. The echo revealed that she has a condition called mitral regurgitation (probably caused by her rheumatic fever as a child) and the a-fib aggravates the problem. This is a leakage of blood from the left ventricle into the atrium of the heart. Anyway, after some medication and close monitoring and some panic, her heart went back into sinus rhythm (normal) and her heart rate is back down to around 60-70. It was around 120-140 when she was admitted. That is great, but they are still going to do a stress test on her to test her heart and watch her for another day or two.

Anyway, just another day in the lives of the O’Neill’s.

Please keep praying for us and for getting those records and for Jan and for anything else you can think of.

KEEP BELIEVING!!
Brian, Angie, Gavin and Grant O’Neill