I wish you all could experience what I'm seeing: Glenn is still feeling the effects of the Ativan. He keeps saying, "This is weird,...... really weird........strangely weird....... weird weird". I tell him HE'S weird. We went to G'ville today for some testing, including a bone marrow biopsy and he convinced them that he needed an extra dose of drug because he was so apprehensive about it. They really didn't want to give him the extra dose but he wouldn't stop about it so he got it. He also had to get some potassium because it was really low again. We won't know results from the tests until later in the week. I'll let you know what we find out.
Glenn got his first check for disability, YEA!!! God is soooo good! Little did we know when all this began that he would be legally disabled. We thought he would have the transplant, recover for a few months then get back to normal. But God has other plans, as we are finding out, little by little. I think, though, that he would agree with me that there has been MUCH more good and positive than bad and negative. Anyway, I will let you know what we find out when we find it out. Right now I have to give a foot rub.
Monday, November 28, 2011
Friday, November 25, 2011
Better
Hope everyone had a wonderful day yesterday. We got to go to my sister's for dinner, since we couldn't go to our daughter's boyfriend's because he has a fever. We were just talking about going see if there were any restaurants open when my brother-in-law called to invite us over. So we got to have dinner with family. God came to the rescue for us!
Glenn's fever is coming down to normal. It was barely up tonight. He feels like he is coming down with a cold, though. We'll see if it was because we had the windows open today, when we get up tomorrow. And counting down the days till we go to G'ville Monday for some tests so we can get a picture of what's going on with the disease as well as the kidneys. I'm hoping I will understand better where he is in this process.
Glenn's fever is coming down to normal. It was barely up tonight. He feels like he is coming down with a cold, though. We'll see if it was because we had the windows open today, when we get up tomorrow. And counting down the days till we go to G'ville Monday for some tests so we can get a picture of what's going on with the disease as well as the kidneys. I'm hoping I will understand better where he is in this process.
Wednesday, November 23, 2011
Still hanging on to a fever.
Glenn is still recovering from pneumonia and on his second round of antibiotics. Yesterday his temp was normal in the morning but in the evening it was up a little. So I can't say it's completely gone, but his cough is much better. We had planned to go to our daughter's boyfriend's for Thanksgiving, with his (her boyfriend's) mom, our other two kids and their girlfriends. But her boyfriend came down with a fever so we can't go now. Boo :-( I think our daughter will be bringing plates of food for us.
In case you're wondering, we still haven't decided where we are moving to. I thought our visit to G'ville this week would give us some direction and it kind of did, but Glenn isn't convinced to I'll let you know when we do make a decision.
In case you're wondering, we still haven't decided where we are moving to. I thought our visit to G'ville this week would give us some direction and it kind of did, but Glenn isn't convinced to I'll let you know when we do make a decision.
Friday, November 18, 2011
A little stirring of the waters
I can finally give you a report on Glenn's appt. in G'ville Wednesday. I held off until we got all the test results.
His labs aren't any better over all. He continues to gradually decrease in his blood counts. He had a chest scan because of the nodes that were found six months ago before the stem cell transplant, and we got the results of that today: he has pneumonia, which explains the fever for the past two weeks. The Dr. there had already started him on antibiotics for the fever when we were there Wednesday, so it's a good thing. That Dr. called today to give us results of that and of some other labs. Basically, his kidneys are just not getting better but worse. His numbers are kind of a mystery so Dr. wants to do a bone marrow biopsy after Thanksgiving to see if the disease is any better. He is trying to find out why the kidneys aren't any better despite the chemo. The hope was that the chemo would put the disease in remission and we would see at least a halt in kidney damage, if not a little improvement. But that hasn't happened. So he and the nephrologist want to figure out what is causing the progressive kidney damage. They will also do other tests at the time we are there for the biopsy. The G'ville Dr. will also review the results of the kidney biopsies Glenn had a year ago and maybe consult with a nephrologist there at Shands about those. So we are stopping the chemo treatments and retesting and investigating to see what needs to be done next. Glenn will have a third week off of chemo while we do all this. Then there should be a new plan of treatment of some kind based on the new results and the reviewing of past results. The nephrologist doesn't want to do another kidney biopsy because Glenn has an increase risk of bleeding because of his blood counts being down. That's pretty much the info we have gotten. He says he feels ok, but then he will say he feels strange in a way he can't describe. And he is more tired than he wants to admit. We did a lot of walking when we were in G'ville, more than he has done in months. He seemed to tolerate it ok, but it really wore him out and made his leg muscles sore because he has lost so much muscle over the past several months from inactivity. So now we are in a state of waiting again.
We plan to have Thanksgiving with our daughter and her "significant other", (my term, not hers. I mostly call him my big teddy bear.) I don't know if either of our other two kids will be there but his mother will be there so we get to meet for the first time. Then Christmas will be here soon, then the new year, the n we move to ?????? who knows where. I'll definitely keep you posted on that decision. It will be nice to know where we are headed. I won't have any new reports to give you next week unless something comes up, but I'll check in a time or two between now and when we go to G'ville for the biopsy/tests, just to let you know that nothing is happening. Enjoy your Thanksgiving week.
His labs aren't any better over all. He continues to gradually decrease in his blood counts. He had a chest scan because of the nodes that were found six months ago before the stem cell transplant, and we got the results of that today: he has pneumonia, which explains the fever for the past two weeks. The Dr. there had already started him on antibiotics for the fever when we were there Wednesday, so it's a good thing. That Dr. called today to give us results of that and of some other labs. Basically, his kidneys are just not getting better but worse. His numbers are kind of a mystery so Dr. wants to do a bone marrow biopsy after Thanksgiving to see if the disease is any better. He is trying to find out why the kidneys aren't any better despite the chemo. The hope was that the chemo would put the disease in remission and we would see at least a halt in kidney damage, if not a little improvement. But that hasn't happened. So he and the nephrologist want to figure out what is causing the progressive kidney damage. They will also do other tests at the time we are there for the biopsy. The G'ville Dr. will also review the results of the kidney biopsies Glenn had a year ago and maybe consult with a nephrologist there at Shands about those. So we are stopping the chemo treatments and retesting and investigating to see what needs to be done next. Glenn will have a third week off of chemo while we do all this. Then there should be a new plan of treatment of some kind based on the new results and the reviewing of past results. The nephrologist doesn't want to do another kidney biopsy because Glenn has an increase risk of bleeding because of his blood counts being down. That's pretty much the info we have gotten. He says he feels ok, but then he will say he feels strange in a way he can't describe. And he is more tired than he wants to admit. We did a lot of walking when we were in G'ville, more than he has done in months. He seemed to tolerate it ok, but it really wore him out and made his leg muscles sore because he has lost so much muscle over the past several months from inactivity. So now we are in a state of waiting again.
We plan to have Thanksgiving with our daughter and her "significant other", (my term, not hers. I mostly call him my big teddy bear.) I don't know if either of our other two kids will be there but his mother will be there so we get to meet for the first time. Then Christmas will be here soon, then the new year, the n we move to ?????? who knows where. I'll definitely keep you posted on that decision. It will be nice to know where we are headed. I won't have any new reports to give you next week unless something comes up, but I'll check in a time or two between now and when we go to G'ville for the biopsy/tests, just to let you know that nothing is happening. Enjoy your Thanksgiving week.
Monday, November 14, 2011
Follow up
As a follow up from last night, the result of Glenn's Dr. appt. today is that he didn't get treatment, but mainly because of his appt. in G'ville Wednesday. Before he is started on a new round of treatment, this Dr. wants to see what the Dr. in G'ville wants to do next, what tests and results come from it and what direction we should go in. Glenn still has a low grade fever but I think the other main reason to hold off on the treatment is that some of his labs are not adequate to receive chemo. He did get a shot to boost his red blood cell count today. That count gradually falls and he gets the shot to bring it back up, and then it goes down again.
So was this morning a fresh and positive outlook from last night? Well, not really, but Glenn is feeling better than he did for the last few days. Every so often, ok quite often, I get to the point that I want to know how long, what to expect, etc. But I know that isn't possible to determine. I do look forward to being able to make a decision about where we are going to live, which we will do after Wednesday's appointment in G'ville, and after we know the results of any tests done then. We probably won't know that information until the following Monday when we go back to the Dr. here and find that stuff out. And be assured that you will know as soon as we know! Until then, reporting from Jacksonville FL in the lovely neighborhood of Riverwood in Nocatee, this is E. B. reporting.
So was this morning a fresh and positive outlook from last night? Well, not really, but Glenn is feeling better than he did for the last few days. Every so often, ok quite often, I get to the point that I want to know how long, what to expect, etc. But I know that isn't possible to determine. I do look forward to being able to make a decision about where we are going to live, which we will do after Wednesday's appointment in G'ville, and after we know the results of any tests done then. We probably won't know that information until the following Monday when we go back to the Dr. here and find that stuff out. And be assured that you will know as soon as we know! Until then, reporting from Jacksonville FL in the lovely neighborhood of Riverwood in Nocatee, this is E. B. reporting.
Sunday, November 13, 2011
A quick check in
I know it's been a while since you heard from me. This was a week off of treatment for Glenn so not much happening. This week he has been trying to fight off a virus, or something. He's had a sore throat developing into chest congestion and this weekend now a fever. We're holding off calling the Dr. because Glenn has an appointment tomorrow. Hopefully the temp. won't get any worse during the night. We're thinking that he may not get treatment tomorrow if he still has a fever. First thing in the morning we will call to see what we should do.
We have been at this for six months now. We don't have any idea how long we will have to continue. Tonight I think we both feel like we're tired of him being sick. Hopefully tomorrow will be a new day and we will have a better outlook on things. It wouldn't hurt to have a few prayers going up regarding that. Thanks.
We have been at this for six months now. We don't have any idea how long we will have to continue. Tonight I think we both feel like we're tired of him being sick. Hopefully tomorrow will be a new day and we will have a better outlook on things. It wouldn't hurt to have a few prayers going up regarding that. Thanks.
Thursday, November 3, 2011
End of round 4
Well, Glenn finished this round of chem and he has next week "off" from treatment. Then he begins again the following Monday, and that week is also when we go to G'ville to see the hema/oncologist to find out how Glenn's body is responding to the treatment. The edema is not too bad this time and hopefully with a week off it will stabilize. Thank you, God! He is going to see the Blue Angels this weekend. We were able to borrow a wheelchair, otherwise he wouldn't be able to go because he can't do much walking. As it is, it'll probably totally wear him out, but he can rest all next week. I get the day to myself while he is at the show, so my sister and I plan to spend that day playing together.
That's about all I have to tell you. Thank you for your faithfulness. I hope you don't get tired of my thanking you because we are continually grateful for everyone's support and I want you to know it.
That's about all I have to tell you. Thank you for your faithfulness. I hope you don't get tired of my thanking you because we are continually grateful for everyone's support and I want you to know it.
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