Not a report I want to give

I've put off posting for a while, and now there is so much going on that I feel overwhelmed to write about all of it.

I am up at OHSU and I don't think we are going home any time soon. But I need to back up a little.

I posted on here when David got his puppy. I think it was Dec. 7th. In that post, I mentioned that David was "off." Well, he gradually became more and more "off." I called the dr the day before he was scheduled to be admitted for the BBBD (he was admitted on 12/14) and I told the receptionist that I wanted to talk to someone about David's odd behaviors and how he was not talking very much. The drs were all in clinic doing BBBDs and checking on surgery patients. They were supposed to call me back but they never did. I figured it was because they were going to see us the next day when they did the BBBD on David.

So when we checked in on Wed. night, I told one of the BBBD team members (a neurologist) about my concerns when she was doing evening rounds. She did all the neurological checks and of course David did them all really great. The next am, I told the BBBD team about David's behaviors, esp. how he "freezes" up and can't move--did I mention that in my post? He gets stuck and can't complete a task, like getting dressed, brushing his teeth, etc. Anyway, they instantly said, "Seizures." I didn't think so…but what do I know? If they were seizures, he was having an awful lot of multiple seizures every day.

Now I wonder...should I have said (insisted) that maybe we need to postpone the BBBD treatment and see what is up with David?

I am going to jump ahead because I'm too heartsick to write a lot. When David was finished with the BBBD treatments and he finally came fully out from under all the sedation, it became very obvious that something is seriously wrong. The doctors do not know what happened. It's not a stroke, not a blood clot. David couldn't stick his tongue out, couldn't swallow, (he can stick his tongue out now, and he can swallow off and on), but he can barely talk and he can't do much of anything. Can't use his phone, can barely feed himself, can't answer even yes and no questions some of the time. He has spells where he drools. I cannot even begin to describe the way I feel when I see him drooling. Like an actual physical knife is in my heart. He is totally aware of his condition. That makes it even more heartbreaking, I think. He has spells where he is better and can swallow and answer questions, using sentences with maybe 3 or 4 words. The nurses describe his issues as "transient."

They had a swallow therapist, an occupational therapist, and a physical therapist all work with David today. He walked around the hospital wing, but barely. He had to use a walker, and a therapist walked right behind him and kept her hands on his hips to keep him steady.

I had a talk with David in order to encourage him. I told him him that I am thinking that....this stinks. STINKS STINKS STINKS. But he has fought hard, valiantly, courageously, and uncomplainingly since the day he was diagnosed. Now this is a setback that we didn't expect and do not want....but we will go forward from this point on. Even if we go forward with baby steps to start out with. David can do therapy-type exercises just like he does his stretching and yoga exercises every day, and we can take therapy walks with his little puppy Jackson. Recovery will take some hard work, but David is a hard, determined worker, and we can do this. He needs a little time to recover from these treatments so it's okay that he is tired and discouraged right now, and we will be sure that he gets lots of rest, good food, and TONS of TLC from mommie dearest and all of his family and friends, and then we will start working really hard to recover. 

The occupational therapist said that David will have days like the weather...some good and sunny days, and some rainy, not so good days. But the weather one day does not mean that the weather the next day will be the same. I like that analogy.

Our wonderful, amazing family---well, part of it---came up today and spent some time with me and David in the hospital. Such awesome, priceless therapy! We talked about crazy Christmas traditions, like cutting down your own tree in the pouring cold rain and mud---such a fun tradition--and just laughed and joked around about different things. My sister, niece and I walked down to the cafeteria and got David a nice dinner so he could have a break from the usual items on the hospital menu. David ate a good dinner---salmon, rice, potatoes, even a slice of his cousin's pizza. He was eyeing his sister's Starbucks, so she gave him her drink, and he really enjoyed it. He was smiling and he would make one or two word comments. He even chuckled once. He is totally aware of what is going on.

I also read a wonderful, just-for-us Scripture to David that my sister wrote down for us: "I am the Lord your God Who takes hold of your right hand and says to you, "Do not fear. I will help you." Isaiah 41:13. How incredibly perfect is that? I told David that it's our verse now, and we both wept. Just a little. We're okay now.

Before my family left, we all prayed for David. My niece Tammy prayed for me…for strength and rest. David started to weep. It broke my heart. Even in his condition, even in his situation, his grief and concern are for me. What an amazing man…what an amazing son.

I forgot to mention…the MRI they did right before the BBBD showed some swelling in his brain. They said it made it hard to read the MRI but they are fairly sure that there has been some slight reduction in his tumor. That's good. But I think David's participation in the BBBD clinical will be seriously reconsidered. I think this treatment could literally kill him. It's very disappointing because we all thought (including the doctors) that he would tolerate it well, since he is young and was in such great shape.

When David is released from the hospital, he will need to come home with me. There's no way, unless there's an incredible, miraculous recovery, that he can be left alone. The reality, even before this procedure, is that he probably should not have been living alone for the last two weeks. I just could not take that away from him. But now we really don't have a choice. He can't even walk to the bathroom by himself. We took this approach…he will stay with us and I will take care of his puppy so he doesn't have to take it out at night to go potty. I will cook him whatever he wants, and he can hang out with his dad and brother and watch football and just kick back for a few days or maybe a week or two, and then we will go from there. We are not planning and acting like this will be a permanent move. We will continue to rent his apartment for as long as David wants us to. No permanent decisions will be made. It's far too early for that. We will work hard, pray hard, and hope for the best.

I'm sick with grief but there is so much at stake here. I MUST be strong and believe that David can recover. I do believe it.

My poor husband who has been a solid rock this whole time is just crushed. He is heartbroken and devastated. I feel bad for him, alone in Salem, grieving. I wish I could be there for him, but all that I have to give is going to David. I'll have time later to pour out attention and love on my husband….at least, I pray that I will time. I have a fear that he will have a heart attack or something. His father and uncle both died of heart attacks at 57. I just can't take that worry on right now.....

I have been watching csn to hear how everyone's Dec. MRIs turn out. Julia, did your sister have hers on the 14th? I am hoping and praying that everyone has great news to report.

Love and blessings, always,
Cindy (stuck) in Portland, OR

PS I didn't mention the long nights we've had here in the hospital when David was doing so bad and the nurses were calling Dr. N back into the hospital the middle of the night to see David. I could see the obvious concern and sorrow in Dr. N's face, and in the non-dog nurse's face. They really feel bad....I knew they really did care about David, but it's touching to see how much they are worrying and caring about him in this situation.