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