Donnie had his procedure this morning. they are still unsure of where he might be oozing or leaking blood from. It could be from his actual tumor. they really weren't able to tell much. they are giving him more blood this evening and will recheck his levels tomorrow. not a wole lot else to report. It's been a long week. I will update when I know more.
Love to all
Keep praying
Robin

I wish I could say that I was writing this from home but I can't say that I am. Donnie received 3 units of blood 2 days ago. He seemed to be doing better but I noticed that his abdomen was swollen last night. he slept the whole night but woke up this morning and was sick. he was throwing up blood. not alot but just the same. Dr Castine came in this morning and said that yesterday his blood cell count had gone up after receiving the blood. today it had gone down again. means that something is leaking or oozing blood in his stomach. He said it isn't bleeding out fast but still needs to be tended to today. we are waiting on the GI dr to come in. Dr Castine thinks that they will go down his throat with a scope again today to try to locate the source of the bleeding and see about stopping it. he will more than likely need more blood again tomorrow. we will be atleast a few more days here if everything goes as planned. we will have to take one day at a time. I will update when we know more.
love to all
Keep praying
Robin

Donnie seemed to sleep a little better last night. They somewhat have his pain under control with pain meds. His liver levels are getting better. His color is a little better but his eyes are still pretty yellow. His iron counts are still dropping so they are going to give him some blood today. He may be able to go home tomorrow but the dr said we would have to take things one day at a time and see how things are tomorrow.
not much else to report
keep praying
love to all
Robin

Donnie did good with his surgery/procedure today. It took 3 hours. I was beside myself waiting. I think I wore out a piece of carpet in the waiting area. I did good for the first hour and a half. After that, I was crazy with worry. They predicted that it could take an hour or more but they had problems with the scope equipment that sent them scrambling to get more equipment to get him finished. But anyway the dr was pleased with what he did and what he found. They put in a permanent stent in his bile duct. They believe that lymph nodes were pressing against the duct and had closed it off. His pancreas was irratated but still ok. He is in quite a bit of pain tonight but they think that will get better in the next 24 hours as long as his pancreas doesn't get inflamed. He will be in here atleast a couple more days. They want to make sure all of his numbers are going down like they should and that they have his pain under control before they send him home. Although he is still very jaundiced (his eyes are like nothing I have ever seen!!!) that should get better tomorrow and continue to keep getting better until he gets his color back.
The kids are holding their own at home. I am so proud of them. I feel terrible for not being home with them, seems like we are always gone, to Houston or now here but they understand that Donnie needs me to be here taking care of him and I think they might be mad at me if I left him alone to come home. I can honestly say we have a great support system. Family and friends are looking in on them and feeding them and whatever else they may need. (Thank you so much!!!)
Thats about all I have to report tonight. I will update as things progress. Thank you to everyone for your support, your love and your prayers. It means so very much to us.
love to all
Keep praying
Robin

a setback

Well, looks like we had a minor setback. We left after work Friday to go see Donnie's Mom and brothers in Mississippi for the weekend. Saturday Donnie started getting jaundiced. I called the dr. they assured me as long as he wasn't running fever he could finish his visit and come in Sunday when he got home. They admitted him to the hospital last night and started fluids. He hasn't been eating or drinking anything because he has been in so much pain. His pain has really escalated over the last week and become unbearable. I was hoping maybe that they may be able to get his pain under control and help him get some sleep here. Not quite there yet. the pain is still an issue. so is sleeping. anyway, tests today show that he has a blockage in his bile duct. he also has pancreatitis. he is on a clear liquid diet and will have a stent put in tomorrow afternoon. Hopefully this will clear things up so his liver will function properly and also give him some relief. We haven't heard from the insurance about his trail yet but that is on the back burner until we get these issues resolved. We will probably be in the hopital a couple more days depepnding on if the procedure goes as planned. They did tell us other things could come up.
I will update when I know more.
Keep praying
love to all
Robin

We are back from Houston already. It was another "slingshot" trip. We left after work yesterday and went to the new dr's this morning. We met with Donnie's new dr and discussed clinical trials and what we hoped that we could accomplish.

Donnie does qualify for a trial that they are doing there. It is a combination of 3 drugs that are already FDA approved. They just havent been tried together this way. It is a very expensive treatment and the insurance may deny it because of one of the drugs. Hopefully, they won't.

Once they get the insurance approved, we will go back, he will have blood tests done, an EKG and if that is all ok he will start the new treatments. He will have to have treatment every 4 days. I know, every 4 days. Wow, that is a lot of traveling. But we are willing to do whatever it takes to fight this disease.

We were told that they would have an answer about insurance within 3-5 days.

Say extra prayers that the insurance comes thru. I am off to bed now. I am exhausted!!!

Keep praying

love to all
Robin

and we are off again

We will be leaving tomorrow after work to head back to MD Anderson to meet with the "phase 1" dr's on Tuesday morning. We don't have any idea what their plan will be but we may be there all week. They told us to be prepared to stay.It's been a tough week. Donnie is still not sleeping very well. Maybe a little better than he was but still not good. He is quite tired lately. He has some pretty serious back pain going on. Dr doesn't know if it is from the lymph nodes growing that are pressing on his spinal cord. He has dropped quite a bit of weight lately. About 25 pounds recently. He doesn't have an appetite at all and when he does eat, it is mostly because I am forcing him to or nagging him to. I hate to nag him but he has to eat. Losing weight is not a good thing at all.He has been having a really tough time lately. He pushes thru and still continues to do as much as he possibly can. But what he can do seems to be so much more limited than it was. He just doesn't seem to have the strength that he did. I know it is hard for him but he is fighting as hard as he can. It is breaking my heart to see him struggle so much lately. But that being said, we are living every day to the fullest of our abilities on that day. Some are better than others but we are doing all we can. Cancer has robbed us of so much but it will not rob me of making as many wonderful memories that we can. Hold tight to those that you love dear and treasure the time that you spend together. We live in such a fast paced world, it becomes easy to take tomorrow for granted. Anyone who is or has fought the cancer battle can understand that I am sure.
I will update from Houston as I can and as I know something. please put Donnie in your prayers!! We need these dr's to come up with something!!!!Keep prayinglove to all Robin