Follow-up on DavidO

unknown said:

More info on clinical trial
Thanks so much for your good wishes, guys. We really appreciate them. Julia, the trial is the Delta-24 at MD Anderson. We'll update once we know more. CindyO

cindysuetoyou said:

Hi, Cindy.

I'm so glad that your husband is doing well after surgery. And I am really glad that they started him on the clinical trial without wasting any time. I will keep praying for you guys and I'll keep watching these boards for your updates. How exactly does that clinical work? Do they inject the virus one time, or will he need several more doses? If so, how are they administered? Is there a link or a website where I could read more about your husband's particular clinical trial? I'm thinking that there are several different clinicals involving viruses....or maybe I have that mixed up with vaccines? I don't know anything about either type of treatment and I really need to put more effort into educating myself. I think I am counting too much on the BBBD alone, and I don't have a good "plan B" or "plan C" in mind....

Thank you for thinking about me and David and for asking about us. We are doing really well. Once we left the hospital and got home, David started making some real progress in recovering from that whole ordeal. We have had a few rough spots but we got past them. I feel like I'm constantly posting all my drama so I thought I'd give you all a little break from me haha.

David went outside to get his camera out of my car a few days ago, and then he decided to take a few pictures. I thought it was great that he felt up to it. He went outside by himself, and he squatted down to photo a flower in our neighbor's yard. He lost his balance and pitched forward into the mud. He could't get up. He crawled over to my truck that was parked next door at my daughter's house and tried to pull himself up but couldn't. I came outside after about 15 minutes and I saw him on the ground and I just totally panicked. I screamed, "Oh, my God! David!" and he called back to me, "I'm okay...I just can't get up." I ran over to him and tried to help him but his legs were totally powerless. I called my husband and he came over and the two of us were barely able to get David back in the house. He had lost control and soiled his pants and he had stool packed in the huge wound that the drs had made last week to drain that abscess. Well, to make a long story short....I cleaned him all up, even his wound, and he's okay. He has to use a walker because he's just so weak and trying to get up really drained him. It was pretty demoralizing but mentally, David actually bounced back pretty quickly. He was joking about falling down with some family members who dropped by later that afternoon. David is really amazing....

We went up to OHSU yesterday and the doctors were very, very pleased with how David is doing. His wound (the drainage hole) is healing really well, even with David being compromised from chemo, etc. They said I'm doing a fantastic job with dressing it, which is like a miracle, considering how awful it is to me to have to dress it...I mean, it's BAD. I have to stuff gauze down inside that gaping hole, following the surgical track...anyway, I'm doing it, and I'm also doing the 2x a day blood thinner shots. Hating it, but it has to be done, so I do it.

So....they said David is done with the IV antibiotics, so we don't have to spend 3+ hours every day, driving to an outpatient clinic. We had to go to a different town because Salem's clinic was full. We were supposed to go one more time today so David could get his port de-accessed, but David tore the access tubing etc. out in his sleep last night. That upset me because i'm totally paranoid about infection...so we went to the clinic today even though the access lines were totally out of his port. I wanted them to check on David. They said that everything is fine and we don't need to come in any more.

David is really weak but weakness and tremors are side effects of several of the medicines he's taking. He is on an oral antibiotic for ten days, then he should be okay and able to do a BBBD again. David and I are both having a very hard time with the thought of another BBBD. I just can't think about it right now.

I am weird. Everything is going good right now, but I am having a hard time. I am crying a lot, mostly in the shower. I am very nervous and jittery. I bought an expensive, high-end baby monitor and I put it in David's room. It has a video feed....with infra-red for night vision too. I am so glad that I have it. I can check on David all through the night. At first he thought it was kind of creepy haha but then he said go ahead and use it. I only turn the video on when I hear any questionable noises. It's just so great at night when I hear a thump or something, to be able to tap a button and see that he is okay and not in the throes of another seizure. Before I had the monitor, I would leap up and dash in his room several times in the middle of the night, and I'd just about have heart failure.

Speaking of seizures...when I go to bed and shut my eyes...I see that whole incident when David had that terrible seizure in my mind. It messes me up. I'm having trouble sleeping and my chest feels really tight. I hate that I am this way....David is the one who had the seizure and he doesn't keep having issues about it like I do.

I went grocery shopping today with my daughter Christy. She told me that when we were first in the hospital, in ER, waiting for David's surgery, that when I went out to talk to our family in the waiting area, that David said to her, "I think I am at the end of my run this time." I was shocked that he had said that, and it upset me so much. I just started sobbing so hard, right in the fruit and vegetable section. The store was so crowded and I couldn't see because I was crying so hard. My sweet daughter put her arms around me and patted me and said, "It's going to be okay, Mom." I bet she was sorry she ever told me. It took me quite a few minutes to get a grip but I managed and we finished our shopping and went home. Some friends brought over a lovely dinner and we all ate together and I felt better.

My husband is off work tomorrow and he's going to spend the day with David so I can go for a ride on my horse. I have such a longing for the peace and solitude of the forest. It's like a physical craving. My heart is yearning to go deep in the woods and just lose myself for a few hours.....

So that's where we are at. When David finishes the antibiotics and has a little more strength, we will have to face another round of the BBBD. I need to be grateful that we have this opportunity instead of fearing and dreading it. I'm working on it.

Thanks again for reading another one of my epic posts. At least I gave everyone a little break for a few days!

Love and blessings to you all,
Cindy (back home) in Salem, OR

cindysuetoyou said:

Hi, Cindy.

I'm so glad that your husband is doing well after surgery. And I am really glad that they started him on the clinical trial without wasting any time. I will keep praying for you guys and I'll keep watching these boards for your updates. How exactly does that clinical work? Do they inject the virus one time, or will he need several more doses? If so, how are they administered? Is there a link or a website where I could read more about your husband's particular clinical trial? I'm thinking that there are several different clinicals involving viruses....or maybe I have that mixed up with vaccines? I don't know anything about either type of treatment and I really need to put more effort into educating myself. I think I am counting too much on the BBBD alone, and I don't have a good "plan B" or "plan C" in mind....

Thank you for thinking about me and David and for asking about us. We are doing really well. Once we left the hospital and got home, David started making some real progress in recovering from that whole ordeal. We have had a few rough spots but we got past them. I feel like I'm constantly posting all my drama so I thought I'd give you all a little break from me haha.

David went outside to get his camera out of my car a few days ago, and then he decided to take a few pictures. I thought it was great that he felt up to it. He went outside by himself, and he squatted down to photo a flower in our neighbor's yard. He lost his balance and pitched forward into the mud. He could't get up. He crawled over to my truck that was parked next door at my daughter's house and tried to pull himself up but couldn't. I came outside after about 15 minutes and I saw him on the ground and I just totally panicked. I screamed, "Oh, my God! David!" and he called back to me, "I'm okay...I just can't get up." I ran over to him and tried to help him but his legs were totally powerless. I called my husband and he came over and the two of us were barely able to get David back in the house. He had lost control and soiled his pants and he had stool packed in the huge wound that the drs had made last week to drain that abscess. Well, to make a long story short....I cleaned him all up, even his wound, and he's okay. He has to use a walker because he's just so weak and trying to get up really drained him. It was pretty demoralizing but mentally, David actually bounced back pretty quickly. He was joking about falling down with some family members who dropped by later that afternoon. David is really amazing....

We went up to OHSU yesterday and the doctors were very, very pleased with how David is doing. His wound (the drainage hole) is healing really well, even with David being compromised from chemo, etc. They said I'm doing a fantastic job with dressing it, which is like a miracle, considering how awful it is to me to have to dress it...I mean, it's BAD. I have to stuff gauze down inside that gaping hole, following the surgical track...anyway, I'm doing it, and I'm also doing the 2x a day blood thinner shots. Hating it, but it has to be done, so I do it.

So....they said David is done with the IV antibiotics, so we don't have to spend 3+ hours every day, driving to an outpatient clinic. We had to go to a different town because Salem's clinic was full. We were supposed to go one more time today so David could get his port de-accessed, but David tore the access tubing etc. out in his sleep last night. That upset me because i'm totally paranoid about infection...so we went to the clinic today even though the access lines were totally out of his port. I wanted them to check on David. They said that everything is fine and we don't need to come in any more.

David is really weak but weakness and tremors are side effects of several of the medicines he's taking. He is on an oral antibiotic for ten days, then he should be okay and able to do a BBBD again. David and I are both having a very hard time with the thought of another BBBD. I just can't think about it right now.

I am weird. Everything is going good right now, but I am having a hard time. I am crying a lot, mostly in the shower. I am very nervous and jittery. I bought an expensive, high-end baby monitor and I put it in David's room. It has a video feed....with infra-red for night vision too. I am so glad that I have it. I can check on David all through the night. At first he thought it was kind of creepy haha but then he said go ahead and use it. I only turn the video on when I hear any questionable noises. It's just so great at night when I hear a thump or something, to be able to tap a button and see that he is okay and not in the throes of another seizure. Before I had the monitor, I would leap up and dash in his room several times in the middle of the night, and I'd just about have heart failure.

Speaking of seizures...when I go to bed and shut my eyes...I see that whole incident when David had that terrible seizure in my mind. It messes me up. I'm having trouble sleeping and my chest feels really tight. I hate that I am this way....David is the one who had the seizure and he doesn't keep having issues about it like I do.

I went grocery shopping today with my daughter Christy. She told me that when we were first in the hospital, in ER, waiting for David's surgery, that when I went out to talk to our family in the waiting area, that David said to her, "I think I am at the end of my run this time." I was shocked that he had said that, and it upset me so much. I just started sobbing so hard, right in the fruit and vegetable section. The store was so crowded and I couldn't see because I was crying so hard. My sweet daughter put her arms around me and patted me and said, "It's going to be okay, Mom." I bet she was sorry she ever told me. It took me quite a few minutes to get a grip but I managed and we finished our shopping and went home. Some friends brought over a lovely dinner and we all ate together and I felt better.

My husband is off work tomorrow and he's going to spend the day with David so I can go for a ride on my horse. I have such a longing for the peace and solitude of the forest. It's like a physical craving. My heart is yearning to go deep in the woods and just lose myself for a few hours.....

So that's where we are at. When David finishes the antibiotics and has a little more strength, we will have to face another round of the BBBD. I need to be grateful that we have this opportunity instead of fearing and dreading it. I'm working on it.

Thanks again for reading another one of my epic posts. At least I gave everyone a little break for a few days!

Love and blessings to you all,
Cindy (back home) in Salem, OR