Saturday, April 28, 2007

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


  1. Angie,

    Thanks for your beautiful words. There are so many people that read these and get absorbed in the moment. It sounds so surreal that you forget it’s actually happening in real time. I actually flew into Charlotte from Dallas yesterday and headed onto Raleigh. I am sitting here with Bryan and Tricia Schneller. They too... have followed your plight, fight, struggles, challenges, and happiness. I know that they visited your family last year and had a blast. Tricia and I have talked about you guys so much over the years and is always a part of our conversation. I tried to call Brian's cell before his first operation but it went to voice mail. I am sure all of the lines are tied up and your persistent emails are still keeping us up to date so we have not hired a detective service to obtain any new numbers to reach you. I would fly out to San Fran in a heart beat if you ever need it... its only a 5 hour flight give or take a few minutes. Please recognize the power of friends as well as the family you already lean on... I can come out and visit, assist, provide a sounding board over the phone, etc... It sounds like Brian is very much back on course to a full recovery and his constant strength and determination will continue to drive forward. I wish that I had 1/2 as much of his will power to succeed. Please let him know how much that I think of him and pray that he has a full recovery in order to get your entire family back into his arms again. Don't be bashful, proud, selfish, etc... call... people will answer... 704-678-8780


  2. Brian & Angie,

    You are in our prayers daily.
    We are just a few houses away once you return to Dover Pointe and are always here to lend a hand. Please don't hesitate to let us know how we can help. (Even if it is as simple as letting the boys come over to play)
    God Bless,
    Keith, Gretchen, Anna, Claire & Andrew Heiar

  3. Angie and Brian,

    I have thought about you both so much these last few weeks, and I have been truly blessed by the blog that Angie (and Mindi) has written. Angie, your strength is absolutely amazing. And, Brian, your perseverance is so very inspirational. As you have said, you both have a cross to bear, and the reason for that is unknown. Know this, though, that through your examples of faith in our Lord Jesus Christ you are shining a light for hundreds, if not thousands, of people to see. Your unfailing faith and trust in God is a testament to what it means to be a Christian. I pray that the miracle we are all hoping for comes through. But, I am so amazed by the both of you. And, I know, no matter what comes your way, you will have God by your side.

    But, please, do take what the others have said to heart. Anything you need - anything at all - you just let somebody know. There will be a line of people waiting to help, even if it is just to pick up a gallon of milk.

    Thanks for keeping us all up to date on what is happening in California. And, Angie, be sure to take care of yourself, too.

    God Bless!
    Ginger & Rich

  4. Hi, O'Neills: Angie, Having just read your latest post, I must tell you that you have helped me define a concept I have often thought about. I have often thought of what the phrase "grace under fire" meant. Hearing how you and Brian react to the changing developments in the "storm" that you are in and then how Jan and Ed have to handle their own "storm" events, I have a visual for "grace under fire." God gives us the grace--His gift--when we trust in Him.

    Brian, I have a question for you: If Grant's idea of hopping on one leg works for you, will that make you "hoppy"? (Oh, don't groan. You know you would have said the same thing if you had had the chance.)

  5. Brian and Angie,
    We look foward to seeing Brian's progress every day. How far he has come. Been praying daily and church prayed for you and added you to prayer chain. Hope you felt the blessings being sent from Decatur. Take care and remain strong.
    Angie what a great writer you are, brings me to tears every time.
    Continued Blessings,
    Jeff and Sonya Taylor

  6. Just want you to know you are in our prayers daily. Your faith inspires us to let go of the trivial troubles in our lives. Beliving for you. John & Maggie Calrk

  7. Angie and Brian,
    Thank you so much for keeping us informed on Brian's recovery. We are praying for you and your family each and every day. We think of you and your strength and know, as you have in the past, you will come through this stronger than when you started. If we each had half the strength and will power the two of you have shown we would be unstoppable, as you are! Please know that we are here for you if you need anything, any time, no matter what. We are still expecting you to visit NC this summer too, we won't go sledding, but the beach is two hours away. We miss you all so much and look forward to our next rendezvous. Brian you have made so much progress in a weeks time, we are so proud of you!! You are superman in more peoples eyes then your son's. Great Job!!
    Love and Miss you,
    Tricia, Bryan, Emily & Hudson Schneller

  8. Brian, Angie, Jan,
    It is so good to hear that you are getting stronger! We knew you could do it. I was with Barb and Colette today and we are all thinking of you guys.
    Take Care!

  9. Brian and Angie,

    I couldn't help but notice the room number as being C111 - Which anytime the number sequence is three one's or more, it is a sign there are angels present. Ask Aunt Sally, she believes too. I'm certain the entire O'Neill guardian angel squad is working overtime to help shield them. For those Catholic's out there, research some saints to pray for their intercession as well. Every little bit helps no matter who/where/what the prayer comes from. My favorite prayer from St. Frances de Sales: BE AT PEACE
    Do not look forward in fear to the changes of life; rather look to them with full hope that as they arise, God, whose very own you are, will lead you safely through all things; and when you cannot stand it, God will carry you in his arms. Do not fear what may happen tomorrow; the same everlasting Father who cares for you today will take care of you today and every day. He will either sheild you from suffering or will give you unfailing strength to bear it. Be at peace and put aside all anxious thoughts and imaginings. I read this when I'm super stressed. It is miraculous! Brian & Angie, I'm amazed at the network of friends you have. But then again you are both so charismatic, it shouldn't be a suprise. You are very blessed! Thanks for taking your precious time to keep us updated. I'm hoping one day more of the Baer family will post a comment. Baer's where are you? Angie, good thing Brian has you, you are like Peter, A ROCK!
    Take Care!

  10. Just wanted to echo what Janna said - we are thinking and pulling for you. Thanks for the updates!

  11. Angie and Brian we just wanted to let you know that we are praying constantly for both of you. I have tried to send this message several times, but because I am computer challenged it failed!!! So, fianally I figured it out, and success! Angie at one point when I talked to you ,you felt as if you were being tested, and you thought you were failing... I assure you you are not. Your faith and your witness are amazing. I joke sometimes and imagine that God has a file box up there, a system of sorts to keep track of what His people have had to deal with. When things start going crazy, with 4 kids they certainly will, I am sure that He must have pulled the wrong card, as I certainly couldn't handle one more thing. It only takes me a second to look at you and Brian and realize that I have a blank card compared to the two of you! Recently we have been studying the book of James, and I thought I would write a little bit for you.James1 Consider it pure joy my brothers when you face trials of many kinds, because the testing of your faith develops perseverance. Perseverance must finish its work so you may mature and complete not lacking anything...Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love Him. So, keep on fighting the good fight, draw your strenght from God, and remember when things seem simply unbareable, BE STILL AND KNOW THAT I AM GOD.

    I'm believing,

  12. Angie,

    You have constantly been in my prayers since I saw you yesterday at church. Please call if there is anything at all that you need done here in St. Albert. Anything at all do not hesitate to ask. I shared with Stephanie last night what was going on with Brian and her heart went out to you both. She loved getting to know you in XKIDS when you worked together. We will continue to keep your family in our prayers. Never ceasing to pray for God's love and peace to surround you. You have an amazing strength that could only come from the Lord. You do an amazing job of keeping everyone informed and obviously have many who love you all deeply. Keep strong in his strength and lean on the love and strength of others as you watch the Lord carry you through this difficult time. What an amazing testimony it will be.

    Blessings Echo

  13. Angie and Brian,
    I wanted to let you know that we are praying for you and now have the prayer team at church praying for you also. Please let us know if you need anything! We are all just a phone call/blog post away. Thank you for sending us these awesome updates. Hope to see you soon. We love you!

  14. Brian and Angie,

    I'm not sure if you remember me, but I worked with Brian and Ed in Global Mining. I met Angie a few times when she would bring the boys in to visit. I was saddened to find out that you have to fight this battle again! You are all such wonderful people. Brian has always been so much fun to work with and always kind. I will be praying for all of you. Also, I hate to hear Jan is having some health issues. I will keep her and Ed in my prayers also.

    I too believe!

    Bekka Fehr

  15. Brian and Angie,

    I just heard from Sean late last week and he included the link...

    It's been years, but I wanted to let you both know I'm thinking about you. I haven't had the pleasure to meet Grant, but the imagery you gave us with your comments are priceless.

    Brian, I was just at Marc Rabb's younger daughter's b-day party yesterday and saw Welborn. You may still hear from him regularly, but if not, they just had a baby. I didn't ask him how old she was, but she was tiny, so it had to be within the last month or two.

    Angie, thank you for sharing your stories. Kids are so wonderful and the look on their faces when they get to see Brian again will be something you both will cherish.

    We'll see you soon when you're back in town.


  16. Angie - once again thanks for the updates. Like everyone says, we keep checking for updates and people keep asking about all of you. You are all in our thoughts 24/7. Hope you're enjoying your time with the boys. They say laughter is a great healer and when Brian gets back with the entertainers (Grant & Gavin) I'm sure there will be a great deal of laughter. Brian - you truly are amazing, just keep going with your rehab - we'll keep the prayers coming for you.

    Jan - Hope they have been able to figure out what is going on and can come up with some kind of answers/and or treatment for you. So glad to hear that JoAnn and Jim are with you. I'm sure they've been a great support for everyone.
    Ed - hang in there, and take care of yourself also.

    Hope all of you feel the nearness of all the loving thoughts and prayers of those of us who care so much about you.

    God Bless & Keep Believing
    Jane & John

  17. Angie,
    I am Shelly Keenan, a friend of Jan's and Peggy Hafner's. There were many of us in Hong Kong together back in the late 70's, and we are all still close friends.
    Anyway, when you were first married and Brian had his first cancer scare, we were all devastated. It sounded so bad. At the time I was teaching in a Catholic school in Peoria, and at Mass every week I asked the students to pray for Brian. I had explained in detail at one prayer service his situation.
    Well, after praying week after week I saw how well Brian was doing and read about all the wonderful doctors he had (form your e-mails). When it was very evident that Brian had made such a remarkable recovery, I had to stand in front of the student body and acknowledge my lack of faith.
    In reality I had been praying for Brian's loved ones to have the strength to accept the situation. Everyone else was praying for the miracle he received!
    This time I will not make that mistake again. I pray for his complete recovery and return to you and your sweet children.

  18. Brian and Angie,

    We are praying every all are nothing short of heroic, and we gain strength in our lord from you every day.

    Brian, remember the 3 rules of our game...keep your head up, both hands on your stick and your stick on the ice. Get back soon (I know you will), I need your help with all we have done in your does Dave.

    We are praying for Jan and Ed as well. Love you both..Kevin and Pam

  19. Brian,

    I wanted to send you a quick note to let you khow that we are happy to hear that you are feeling better each day. The words "Brian & Angie" have been a very popular phrase around our home these days and prayers are with all of you. I'm looking forward to sitting around and talking about old times in Dover Point. I would like to stop by your dad's when you get to town.
    Your friend,
    Mike Brix

  20. Angie-

    Thank you for keeping everyone posted on Brian. I know I am one of the eager ones to learn about Brian everyday. Your family is in my prayers. Angie, continue being strong and Brian, keep going, you are doing great!

    Let Brian know that the "Bat Cave" awaits his return.


  21. Angie, You are an amazing woman! Thanks for sharing all this with us. I wish we could carry some of this cross for you and Brian. Just know we are all thinking of you, always.

    Brian, Keep up the strength (and your sense of humor), you are truly a fighter and inspiration! You are in our prayers daily.

    Gavin and Grant, You have amazing parents...I bet you are both on your way to becoming supermen yourselves!

    With love,
    Your friend,

  22. Brian and Angie,

    Our thoughts and prayers continue to be with you. We knew you would be fighting and making progress Brian. Keep it up. You both have such amazing faith and belief, it will only bring you good, positive results.

    The weekend of May 12, our parish will be participating with the Mantellate Sisters' St. Peregrine Ministry in the Liturgy for the Healing of the Spirit. We have added Brian's name. "Do not let your hears be troubled or afraid."
    For the next two weeks our prayers will be directed to St. Peregrine (Cancer) and St. John of God (heart). Hoping for lots of good news during the month of May.

    Jan, we are really sorry to hear about all your problems. Sometimes when it rains it pours but this rain needs to be for new beginnings with everything better. Hope things get straightened around for you soon.

    Ed, be sure to be taking care of yourself and try to get some rest. Our thoughts and prayers are with you also.

    Angie, if you have the time, keep the news coming to us. We really appreciate it. Hope you had a safe trip back to California. I know the boys enjoyed having you home for a few days.

    Keep up the progress Brian!

    Our love and prayers to everybody,

    Aunt Anne and Uncle Dan

    God Bless You

  23. Hey Angie,
    It was so good to see you on Sunday at Church - you had lineups of people waiting to talk to you so I didn't want to hold you up too much! But I did just want to add, that we can easily put together a moving crew if you need people to pack boxes here or anything like that. DON'T hesitate to ask!! We love you and continue to pray for you all. I pray today that you feel God's presence all around you - and that you will find some REST in Him! Love Janelle

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