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

Update April 23, 2007

Again, this is Angie's sister Mindi writing. After a conversation from Angie this evening around 10:00 pm central time, the pathology was revealed by Dr. Edwards this evening. He said it was called a Glioblastomo Grade IV tumor. I have done a little research on this type of tumor before writing this blog and have added a web page for people to explore if you want to know more. Also the American Brian Tumor Association page has a lot of information on it, that address is www.abta.org.

http://www.sd-neurosurgeon.com/diseases/glioblastoma.html

The Stanford hospital as well as Dr. Edwards, Angie and Brian's brothers are trying to still get Brian's records from his last radiation treatments he had to see if he is elligible for more radiation. They are trying to get the information from the hospitals in Colorado. Once they get that, they will be determine if he could have the cyber-knife radiation treatments. He would stay out in California to have this procedure and it would happen sometime next week. He is moving to the rehab floor tomorrow to get extensive rehab as he is progressing very well in his speech. He is following four and five step commands and is saying more and more words that he is coming up with on his own. For instance, if you told him to name a fruit, he could say, apple, orange, pear on his own. As for physical therapy, he is still having some issues with his right side motor functions. He did stand today and tried to step side to side but his right side has a hard time following. The therapist thinks he has great potential to regain a lot back though.

Brian is a fighter and I know he will not give up. Angie is fighter as well and such a great supporter and encourager to fight against this. It is a new battle again, he has over came one already 10 years ago and it is just time to overcome another. They are so strong and courageous that I know they can do this again. Brian, you are so many people's heros, so many people look up to you and see the good in you and all you do, so just keep fighting, don't ever give up. Angie, we are all here for you as well, try to keep your head up as I know it hard sometimes. You are an amazingly strong wonderful person, and if anyone can keep this battle going, it is you. Like I said before, "It is God's Battle, not ours" God has a plan for all of us, we just don't know what his plan is, but it is in His hands. All we can do is fight and that is what we need to do at this time.

Angie, Brian and all the O'Neills, please know that there are 100's of people willing to help in any way. Please let me or somebody know, if there is anything at all that we can do for you in any way. The prayers are still coming strong and please continue to pray for all the O'Neills, as Jan is still in the hospital as well. Don't get discouraged or dwell, just pray that much harder for this family.

PLEASE KEEP BELIEVING!!!!

We love all of you,

Mindi

2007 April 22 Update

Tried to post this last night, but ran into problems and had to reboot. Got too tired and waited til morning:
April 22, 2007

Well, Today was a very different day than yesterday. Brian is completely alert and with us. He was very sad and frustrated when I first arrived this morning as he could not say much of anything except “yeah” and “well”. He could not move his right arm/shoulder/chest or foot or calf or lip very well. His anguish would have broken anyone’s heart.

Then physical therapy came. He got into a chair with some help and they showed us some exercises to do. He did great. His right big toe is working and his hamstring and quad are great. However, his ankle/foot and the calf are not working. This will make walking a challenge. We have some exercises in which I help his foot move to try to send the signal back up to the brain to work. We did not meet with occupational therapy today, which should help us with his arm/upper body, we are told. Speech therapy went very interesting. By the end, Brian was repeating lots of sounds and words. He can read and point to the picture describing the word, etc. They practiced some “automatic” speech – saying things that we are so used to saying, we don’t have to think about them – counting to 10, days of the week, etc. He tried to hum happy birthday and didn’t get the melody. However, when singing happy birthday, the melody came, but the words were very jumbled. She said this is a great exercise because the melody is on the right side of the brain and the words can come automatically with the melody. So, we practiced singing again later in the day. He got most of the songs out. Also, she told him to listen to music a lot and sing along or hum along without even thinking about it – even if the words came out wrong. We practiced LOTS of things. I would say words and he would repeat. He is GREAT at repeating. They gave us a little typewriter thing and he can type his words okay. Anyway, I just thought it went great. By the end of the day, he was trying to crack little jokes (by getting one or two key words out) and letting us know he wants ice cream, or has to pee or whatever. He is off all the IV’s and the catheter, etc.

Physical Therapy told me that they thought Brian was a great candidate for rehabilitation. I thought “no, duh” But, what they meant is that they think he will need to go from here (neurosciences) to in-patient rehab. He needs to learn to use his right arm and leg in order to walk and take care of himself. In patient rehab is basically just hanging out in your room or else totally rehab – hours a day; physical, occupational, speech, whatever. This is pretty much all he is doing now anyway. His vitals and stats are stable, all they do is measure his intake and output and the various therapies come work with him – but only for 20 minutes at a time or so. So, we have to work this out with insurance, but that is probably the next step for Brian. They said, “you realize you can’t really take care of him at home until he is more rehabilitated?” I said, yes. They said they didn’t think outpatient rehab was a good idea for him until he gets more abilities. Anyway, let’s hope and pray that our insurance covers in-patient rehab. Not all cover this. We feel that this is a good thing. We would do this in Illinois, probably depending on our next steps here with respect to the treatment of the cancer.

Tomorrow we should meet back up with Edwards’ team to discuss how the surgery went – MRI was yesterday to measure the resection and to discuss next steps. They are still talking about this cyber knife radio surgery and we have to learn more about that and see if Brian is a candidate. We should also get some pathology information, we think. That is still our NUMBER ONE prayer request.

Completely unrelated, Jan (Brian’s mom) had more issues with her atrial fibrillation today. She went to the ER again and this time she was admitted. She is getting all kinds of tests and stuff done tomorrow and they are going to keep messing with her medication. I guess this is relatively common, but it is just a matter of trying different meds and finding the dose and meds that works. She just didn’t get a chance to figure it out before they came to California. Anyway, pray for Jan as well.

So, today was a good day, except for Jan’s issues. Very emotional and moving and still frustrating at times, but Brian is encouraged. He was in such a good mood when I left and not tired and groggy and not that discouraged. He is my hero (we practiced that word a lot today) He asked for a dictionary or some sort of word book to practice his speech. He was all hooked up with his I-Pod (which he can say very well) and looks great. He feels dirty and wants to shower badly. I cleaned him up today, but it is not the same. Anyway, praises and thanksgiving for a good day.

Okay, I am babbling. I am tired and I want to get to the hospital early tomorrow not knowing what time the doctors get there on Mondays.

KEEP BELIEVING

Angie, Brian, Gavin and Grant O’Neill

Update April 21(22 to most), 2007

Well, first of all, a huge blessing and thank you to my beautiful sister, Mindi, for updating my blog when I was simply incapable of doing so last night. God certainly knew what he was doing when he made us sisters. You are my very best girlfiriend and I love you dearly.

Well, your prayers must be working today in the sense that we at least have newfound strength and peace to handle each day. Here is an update on today:

Saturday, April 21, 2007
Brian woke in ICU (or at least when they would let me in during their NAZI ridiculous visiting hours) in better shape in the sense that he was much more alert and aware than yesterday. ON April 20, he had been under anesthesia for 5 hours, and then they were trying to analyze him neurologically. He was groggy and out of it and sick. He was also in pain, which they were afraid to over treat thinking it would be too hard to analyze him neurologically. Anyway, in the end, he was better this morning, not hurting as much, able to swallow and able to motion better.

Brian is still unable to move his right side arm and lip/face. He is not able to talk more than pretty much “yeah, or no”. He can shake his head, he can answer yes or know and he wants so desperately to be able to communicate his needs, but he just cannot. Dr. Edwards this morning said not to be discouraged yet. He said that he expected lots of problems post-operatively, but Brian does not seem to be improving much with respect to speech throughout the day. He did, however, shift his standard response from “yeah” to “well”. I was so happy and proud of him. He is my hero and he is superman (just ask our boys) even when he is down. He is moving his right foot and told me through gesturing and yes and no questions that he felt as though some of the right side hand functions could come back. (He can feel, but just cant move his right side) Probably the most frustrating is the speech. Imagine knowing what everything around you was said, being able to read, being able to completely know how you wanted to respond, but simply INCAPABLE of getting out the words must feel. I can’t even comprehend. I know how disappointed and frustrated I am when I can’t figure it out and he is trying so hard to tell me something. Last night, he was trying so hard to tell me something and his blood pressure was slightly rising and he was getting upset. I could not figure it out. It had something to do with the medicine that he takes and what we maybe brought with us. He kept pointing to his hip. The nurses gave up, took breaks, and even told us that they were going to have to give him blood pressure medication if he didn’t calm down (I am trying to give them the benefit of the doubt – they are ICU nurses and their job is to watch stats). Jan (Brian’s mom) came in and I was telling her about it and she said, “oh his pill box that he carries around every day” at which he said, “YES” with resounding relief. He wanted to make sure he was getting his Tegretol (anti-seizure meds). They assured him he was getting anti-seizure meds and they were taking good care of him. He was so relieved. I was so proud of him for thinking of it.

He was transferred today to the neurological unit – to a room called Neurological Close Observation Room (NCOR). They are awesome in there and so much more lenient on his visiting hours (can you tell I was struggling with that? I just want to sit with him and hold his hand. I don’t even have to turn on a light or a TV). Anyway, there are 2 nurses in the room for 4 patients. It is not very private, but it is where he needs to be until he gains some functions. Today, the NCOR nurse asked me about his Tegretol because guess what??? His tegretol levels are low. Can you believe it? He was trying to tell us that last night and the ICU nurses shrugged it off and said it was all being taken care of. In the meantime, he was temporarily being given a different seizure medicine, but as soon as he started taking things orally, he was not given that anymore and his tegretol levels had dropped, as he had feared while in ICU the night before. So, he is at risk for seizures, but they are working to catch him up on his dose.

Okay, so a lot to take in. Bottom line, he understands, tries to communicate and tries to move, but cannot speak more than a couple of words and can only barely move his right leg. He is supposed to meet with physical and speech therapy tomorrow. Speech therapy is supposed to have a communications board, which is a board that Brian can point to to express some basic needs. We are doing fine in the hospital, but it would be very challenging at home when his needs are more complex.

On a totally separate note, Brian’s mom, Jan O’Neill, who is here for support for Brian as well as his brothers and his dad and myself, was diagnosed a few weeks ago with Atrial Fibrillation, an irregular heart rhythm. One of the side effects of this particular condition is weak, but rapid pulse, accelerated heart beat and changes in blood pressure. Her condition was reversed, but came back 2 days before they left for California. She has been experiencing some problems here with heart rate and weak pulse. It takes a lot of playing around with the medications, but her cardiologist is back in Peoria. Anyway, today she was in the ER at Stanford due to the above condition. They have adjusted her medication to control the heart rate, but she easily gets winded and needs to be very careful.

Anyway, we could use some prayers for the following:

The pathology that they are going to reveal early this week

Brian’s postoperative condition – speech, right side weakness.

Jan’s heart

Gavin and Grant to handle our absence (Gavin has been crying a lot for missing me)

For my mom, Karen, to be able to handle the kids and the challenges that come with them. She is doing great so far and I thank God for that and I bless her for that.

The ability to take one day/one challenge at a time

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

Update 2007 April 20

Hello eveyone,

This is Angie's sister, Mindi, writing on behalf of Angie. I am not near the writer Angie is, so please bear with this blog post.

Brian went into surgery this morning around 10:30 AM and was in recovery, which is ICU, at about 4:00 pm. Brian was alert somewhat after surgery, he is not, however, using his right side at this time at all from head to toe. He was asked to move his toes and he could not. He is also having some speech issues at this time. He did know who people were and was also asked if he had any children and he held up his left hand and put out two fingers. After asking how old his children were, he again held up his left hand and put out two fingers. The nurse said, "You have two children that are both two?" and he said "yeah" with a nod of the head. He is having trouble communicating what his needs are, for example, he was uncomfortable with his pillow under his head but could not find the words to tell Angie. After some nodding, she did figure out his pillows were making him uncomfortable. Dr. Edwards did expect some of these side effects as it was only a few hours after surgery at this time. Dr. Edwards said that tomorrow and Sunday would be the best time to tell how much of his right side and speech came back as right now some of it may be surgery enduced. Dr. Edwards has also said that the frozen pathology "first sight" of the tumor they removed does show that it is an astrocytoma tumor but the grade is unknown at this time. The pathology report will be in sometime Monday which will tell the grade of the tumor as well. Dr. Edwards did say they removed a lot of the tumor.

Angie is most concerned due to the other surgeries that Brian has had, he has never woken up like this before, so we need continued prayers for Brian's recovery and regaining of his motor and speech abilities. We need prayers for the continued strength of Angie and the entire O'Neill family as it is hard for them right now to have that strength on their own.

According to the Bible, "The battle is not your's, it is God", so we have to fight and stand for this battle. So keep the prayers coming, think positive and not dwell. When the Isrealites were in battle and losing, it was because Moses' and Aaron's arms dropped and the Isrealites had to hold them up, that is what we need to do for Angie right now, we need to be the one's to hold up her arms, so please continue to pray, pray, pray.

KEEP BELIEVING!!!!!!

Angie and all the O'Neills, we love you.

Mindi

2007 April 19 Update

We just got through spending a very long, boring day at the hospital from 9 to 4 today waiting most of the time to see the next specialist.

Here is what we found out about surgery today:

Surgery is scheduled for 9:40 Pacific time - that is 12:40 Eastern, 11:40, Central and 10:40 Mountain time. We will arrive at 7:40 am. Dr. Edwards expects the surgery to be about 5 hours or so. He is going to go in the same way that he has gone in the past over Brians left ear. He thought he was going to be able to get to it pretty good. However, he said he will not take much of a margin around it because he can't differentiate what is healthy brain and when they start taking healthy brain, they start to take away what makes Brian himself.

He stressed that he is not so much concerned about the surgical procedure and its effects, but rather what we find and how we treat it. Brian has had many doses of chemotherapy and one of those types can only be given to a certain extent before you start to jeapordize creating a cancer elsewhere - leukemia, bone marrow, etc. So what follows is very important. The pathology will take a few days to get back - probably sometime on Monday. The neuro- oncology team at Stanford will review Brian's case here on Friday. Brian will meet with the neuro-oncologist while in the hospital or on Wednesday, if not. We have an official appointment on Wednesday, if he does not see us in the hospital. Dr. Edwards mentioned a few options, such as more radiation depending on what amount Brian has already had (they are reviewing this now), cyber-knife surgery (a radio-surgical technique), a different chemotherapy, etc. All will depend on the pathology. Everyone is very pleased at Brian's overall condition and if he does have problems with his right side, he always has his left which he uses for most things anyway. He is also still concerned about Brian's speech being affected by the surgery, but we will work through that if it happens.

On a different note, we are going out to eat some seafood tonight to celebrate our 10th wedding anniversary (today) with Brian's family.

Please pray for the surgery tomorrow, and for that pathology, pathology, pathology!!!

KEEP BELIEVING!!!!!

ONeill Update 2007 April 17

Just a quick note to everyone about our trip:

We leave tomorrow at 11:00 local time Edmonton, arriving at 3:00 local time San Francisco. Ed and Jan (Brian's folks) and Sean and Michael (Brian's brothers) get there before us and will pick us up. We had a challenge finding reasonable and close lodging to the Hospital since it is in Palo Alto California (Silicon Valley), but have some reservations finally.

The surgery is on Friday, April 20, at an undisclosed time (meaning they won't tell us until the day before for whatever reasons) at Stanford Hospital. They say to expect to be in the hospital around 3-5 days. Brian will be in ICU the first night for recovery for sure. Longer, if necessary. Right now, our flights have us returning on Friday, April 27: me to Edmonton, Brian to Peoria accompanying his parents. Depending on Brian's condition, I will stay long enough to get things situated, close accounts, pack, whatever.

Thanks so much to those who have helped make everything so easy so far - making travel arrangements, expediting our move, bringing food, paying for things, listening to us, crying with us, praying for us, giving rides, etc. Everything seems to be falling into place. We even have an appointment with a neuro-oncologist (a doctor who does nothing but treat brain cancer) post-operatively. We haven't seen a neuro-oncologist in 7 years since we moved from Denver, so it will be good to get a specialist opinion again. And, as far as our move goes, things seem to be falling into place for that. Karen, my mom, is here to help with cleaning the house and getting things in order. We are working on getting the dates arranged and should have more details on that in the next week. The boys' schools are aware and sensitive to the situation and are praying for Brian (both go to Christian programs).

Our biggest prayer requests:
#1 - the pathology of what they find. This is our biggest concern as this will determine the next course of treatment and the prognosis. We pray that what they find is contained, and easy to treat. Miraculous would be non-cancerous - like I said before, I know our Lord is capable of this.

#2 - Brian's condition post-operatively. No loss of function. No deficits. No speech problems. and a speedy recovery.

#3 - for Brian's current symptoms to subside - he is very tired and he is having lots of tingles and sensations and occasional lack of feeling on his right side - hand, foot, calf, lip, groin, and the newest - his shoulder. He seems to have a new problem every few days or so and this is especially concerning to us considering he had no problems in December.

#4 - As complete of a resection as is possible for Brian - for Christ to guide and lead the surgeon and the entire medical team.

#5 - Blessings on those who have helped and offered to help

#6 - Protection for our families. Gavin has a headache, a fever and has been vomiting (when it rains, it storms in our house) for a couple of days now. So, my mom will have her hands full. We are praying that the rest of us are unaffected by this virus. Also, protection for safe and easy travels for all. Protection on our kids while their parents are away.

#7 - for length of days for Brian - that he can be a Daddy to his boys and a husband to me for a long time.

#8 - Peace, faith, love and support at Stanford and during the upcoming days and the move.

KEEP BELIEVING

Brian, Angie, Gavin, and Grant O'Neill