Thursday, April 26, 2007

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".


Angie, Brian, Gavin and Grant.


  1. Angie,
    thank you so much for keeping us updated on what is going on.

    I continue to pray and fast for all of you.
    Pray for a safe flight back to Edmonton,when you get there to hug your two little guys.
    While you are in Canada, that all you need to take care of is going fast without any delay.
    The Joy of the Lord is your strength, that you continue to feel and see Him at work,each step of the way.
    During the time that you are away from Brian, that you get great reports of healing and change. For we are believing,that all the energy he is putting in, and the prayers together will bring what Brian needs most.
    Brian the strong warrior that he is, has a mighty team going with him, all the friends, family going forward into the field of light, bringing forth the innerpeace, innerhealing, that supports him to get stronger each moment.
    We thank God for the medical team,
    working so hard,all the people as the support.
    As we are all in agreement with God about all of this, seeing signs and wonders to follow.

    Angie, have a safe trip back to Canada,and back to CA next week, I will continue to pray.
    Keep believing, Love you Marjo

  2. Angie,

    Thanks so much for the updates. You guys are on my mind constantly, and it is so nice to be able to keep up with you this way.

    You and Brian both amaze me. You have such strong faith and determination! You are truly an inspiration to all of us. I know Brian will continue to fight to get better and he will! I remember when we were in Colorado and he was determined to move that tree stump, it took him almost the entire day, but he did it!!! He will do the same now.

    I'm excited the boys are coming to Beihle. I can't wait to go down and play with them. I will make sure thier buddy NICK goes down as well.

    You and the entire O'Neill family are in our prayers. Hope you have a nice trip back home and take care.

    Deb and Paul

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  4. Hi Angie and Brian
    I'm sure being back in Edmonton will be a whirlwind for you. Please know that we think of you everyday and are so happy to hear about Brian and the strength he has to fight back. We may not get to see you again but you must know that you will always be on our minds and in our prayers everyday. I know Randy really enjoyed working with Brian and would love to him back here in Edmonton. But I'm sure as soon as possible Randy will talk to Brian.
    Always Randy & Carol

  5. Angie and Brian,
    I know you don't feel like it, but you are an inspiration of faith. We've been praying so hard. I check this site about 5 times every day! Adam asks me every day if there's been an update. He's been taking it very hard. He's cried two times! And I've only seen him cry once in my life.

    I thought you'd like to know what my prayers have been sounding like inside my head: "God, thank you for our health. Please keep the boys safe, guide Adam at work... Aw, F#%K! Forget that, it seems so petty. Bless Brian and Angie. Heal Brian, keep Angie strong. When Brian gets his next scan, let there be nothing there. Give him a miraculous healing, and restore him to full health. Because if anyone will tell the world about your miracle and further your name, it's Angie and Brian." (Yes, I've actually said the "F" word in my prayers. Weird, huh? Because I don't usually say it out loud.)

    So much love coming your way! And please let me know when you'll have possesion of your house. I'll go plant some flowers. Or leave me a key and I'll go clean before you come home. Seriously!

    Love, Kara & Adam

  6. Angie,

    Again, thanks for the updates on everyone. Please let me know of ANYTHING we can do back here in Dunlap awaiting your arrival.I know the boys are going to be very excited to be together with there Mom & Dad again!! We pray for save trips for all and are here if you need us.
    Love and Prayers,
    Mike,Kathy,Jessica & Nicole

  7. Angie, thanks so much for your postings. I know it takes tiume and that sometimes it's difficult, but that makes your words all the more precious. Tell Brian I have still not replaced my bad hip. We had discussed it many times especially after his two. Now every time it "pops" it serves as a reminder to say a small prayer for Brian. So for now I won't replace's a good excuse anyway.

    This prayer was sent to me by a friend. Reading it slowly and thinking about it gave me a feeling we are not alone...even when we seem to be. May it provide you with a few moments of calmness and may His blessings wash over your family...

    God Bless,

    Mark and Sue

    St. Theresa's Prayer: May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.