Donnie is having a rough day. He woke up around 2 this morning in pain. He was up until about4:30 before going back to sleep and then was nauseated once he woke back up. I noticed last Thursday his left foot was a bit swollen. Then yesterday I noticed that the right foot and calf had swollen as well. Things went from bad to worse over night. When he got up this morning, I noticed swelling higher in his legs but also his arms. The dr said his liver numbers went back up a bit. That could be why he has more pain. It could also be contributing to why he is swelling. I don't remember exactly how he explained it but something with the protien and liver function. Anyway, they took him off of the fluids that they were giving him and are going to give him a diuretic to help get rid of some of this fluid that he is retaining.They took him down for radiation about 2 and he ended up getting sick before they could even do anything. Bu..t, afterwards he said he felt better. So they were able to do the radiation. H..e is resting now and dreaming. he is talking in his sleep again.Hopefully this is just one of those bad days and things will look up tomorrow. He had such a good day yesterdy that I was hopeful that today would be good too. But all we can do is take one day at a time and hope that the next one is good.Thanks again for all of your support and prayers. It means so much to Donnie and me.Keep prayingLove to allRobin

I'm sorry it has been so long since I posted a blog. It's been a difficult week. Donnie.. started radiation on Wednesday. I..t made him quite ill. He had radiation again Thursday and again on Friday. He didn't get sick those days. Seems that they got the naseau medicine combination.. right. He is quite tired though. He has been sleeping alot. During.. the day atleast. He likes to keep me up at night.
they increased his pain pump meds today. I was hoping that by this time, we would be decreasing them. I am afraid to mention the word home or speculate when we may be able to go. I don't want to get my hopes up. The important thing is Donnie is where he needs to be to control his pain.

I can say, I miss my kids. They come up and visit but it isn't the same as being
at home with them everyday. Thank goodness that they are self sufficient and have people looking after them. But they don't want me to come home without Donnie. They want me to stay with him.
Not much else going on here. They don't give him radiation on the weekends to give his body a break. As of right now, they have 14 total scheduled. He will have one each day Monday thru Friday. they did say that could change. We just have to take one day at a time. I hope that it starts shrinking the lymph nodes to ease his pain.Althou..gh he is sleeping alot, he is determined to make me experience hypothermia... I swear he keeps the room so cold that I could rent it out as a meat locker. Who needs an icebox? I am dressed for a blizzard and wrapped in blankets all day and night. But, if it makes him comfortable.., I will continue to deal with it. Sometimes, I just have to go out into the hall to thaw out. Maybe I should go buy a parka.
Not much else to report here, I will update more when we have news. Thank you to everyone for all.. of your love and support. it mean so much to us
love to all ..
Keep praying
Robin

I thought that we would be able to go home today but Donnie's pain got really out of control last night. He decided about 3 a.m. that he wasn't ready to go home. The dr came in this am and said that he thinks that the lymph nodes growing in Donnie's abdomen are what are causing probably 90% of his pain at this point. If we go home, his pain is going to stay at the level it is or only get worse. Our only option is radiation. They are going to try to radiate those lymph nodes to try to shrink them and see if that will help alleviate his pain. Granted at this point, we know that there is no cure, I still pray for a miracle. He will have his first radiation treatment tomorrow afternoon. If it works he probably won't see any break in his pain until late next week. But then you get to deal with the side effects of radiation. Hopefully it will give him some relief. It has been a long day. I am off to bed soon.Love to all keep praying Robin

2 weeks today. It seems like forever. I did go home for a couple of hours yesterday and I worried about him the whole time I was gone.
His night was really bad. Seems like so long before his pain was under control. I will be honest, it scared me. It hasn't been that hard before to get under control. I hope that tonight is better.
He had another test today. An upper GI series? He drank the barium and then they took xrays as it moved thru his intestines. It took almost all day, they kept coming back to get more xrays. I am assuming and hoping that we get the results back tomorrow. Things seem to be moving, they said the barium could actually help him. I am hoping that the test shows them what is the matter so we can get him fixed and home!!
I am really hoping that we go home tomorrow. I know I have said that since we have been here but I REALLY hope he gets to go home. He wants to go home so badly. I do too.

Today is day 10 in the hospital. I feel like we have been here a month.
Donnie had a rough night last night. We had hoped to go home yesterday but I am glad that we didn't because he was in a lot of pain last night and I don't think that we would have been able to manage that pain on our own last night.
He got 2 more units of blood. I don't know if his red blood cell count is still going down or not. they took blood this morning so I guess we will know later.
His liver levels are still getting better (at least they were yesterday) but it seems all the medication is taking a toll on his intestines. I swear, we get one problem fixed and another comes up.
Hopefully they will get everything worked out for him soon. I hate to see him hurting.
keep praying
love to all
Robin

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