Yea!!

We got Ray home this afternoon around 4:00. He's been given a few days off--no Dr. or hospital visits until Tues. morning. What are we going to do with so much time on our hands? Thank you so much for all your prayers!!

Love you all,
Kim

Quickly

Just a real quick note--Didn't get Ray home today; looks pretty good for tomorrow. The Dr. (infection specialist) felt another couple days of antibiotics would be best. We're meeting with the oncologist @ 7:30 in the morning to discuss the upcoming chemo regimen for next week.

Love you all,
Kim

Home...Maybe?

The Dr. came in this evening with some great news--possibly getting to go home tomorrow! He wants Ray to continue antibiotics as an outpatient for a few days. We'll know more details in the morning, as the Dr. is still working on those. Evidently, some antibiotics can be given as an outpatient and some cannot. We are soooo ready to get him back home. Of the past 19 days, he's only been home 3.

He's decided he's finished with the pain killers and started refusing them this afternoon. He's had very little pain today, but this morning was still having the "crazies." He said that's the worst feeling in the world, to be going crazy and you know it! So I guess that means it would be better to go crazy and not have a clue!! Hmmm.

More later.
Kim

Just Slightly Crazy

The pain killers were beginning to get too strong for Ray giving him the feeling he was going crazy. Of course, this is not uncommon for these narcotics. He kept telling me, "I know I'm
going crazy, hearing and seeing things that aren't there. Stay right here and help me keep it all straight." Fortunately, that didn't last long and he's not needing as much now and has been able to back off on the amount.

Some more good news is that the white blood count is finally going up which will do more for healing the infections than the antibiotics can do for the body. That's how it was explained to us. His WBC improved quite a bit yesterday and is even better today! The platelet count is also much better.

The Dr. says this tells him that the bone marrow is recovering from the chemo. So where do we go from here? We're told that we DO need to let the bone marrow continue to recover some more, but at the same time we have to keep on the chemo regimen to prevent the leukemia from taking over. BLAH!! There's a fine line in there somewhere. We're hoping to hear something from the biopsy results today that would tell how the leukemia has responded to the chemo thus far.

Yesterday afternoon was his best few hours he'd had in a long time. To make it even better, he had some visitors that make the whole world better just by walking into the room. Thanks SOOO much Willie Faye, my Mom, Sisters Mary Michael and Mary Jude, the Cow from Chick-fil-a, Mary Lou, and Synthia! It was great!

We continue thanking God for all our dear family and friends that are truly a blessing to our family.

Love you all,
Kim

Less Pain Now

After speaking to the Dr. this morning about the pain management, the dosage of the pain killer was doubled. So now Ray's telling everyone about how good he's feeling and that he is getting better. Then I have to remind him why he's feeling so improved! He's also been able to sleep more today than he has in a while. In reality, I'm sure he is feeling better. I do hope this is the beginning of more good things to come.

The biopsy was done this morning and went very well; not nearly as painful as the last one. He and the Dr. visited all the way through it.

We love and appreciate every one's prayers, calls, cards, and concern.
Kim

Still a Pain!

A bone marrow biopsy is scheduled to be done at 7:00 Monday morning-followed by days of waiting for the results. The last biopsy he had was very painful, so he's really dreading having to go through that again. The regimen he is currently on, calls for a biopsy every 14 days.

He's still having severe pain in the sinus/face area. Pain killer dosages were increased today. I plan to really press the Dr. for answers tomorrow as to exactly what is going on there. After this much time, I don't believe he should still be in this much pain. Over the weekend there were different Drs. on call.

He does smile though each time he uses his new remote control. Ha!

Love you all,
Kim

Improving

Things continue to slowly improve-the pain is still the biggest problem, but even that is getting better. He's also been able to get some sleep, which makes EVERYTHING easier to handle. The Dr. is once again insisting that anyone who comes into that room must wear a mask.

A bone marrow biopsy is scheduled for Monday morning, so he'll be in the hospital at least until after that. The Dr. hasn't said a word yet about going home, we're just speculating.

He's getting very picky (grouchy). Today he'd had it with that hospital remote control for the TV. You know the one where you have to rotate through all 60+ channels to turn the TV off or go back down to a previous channel, so this afternoon he sent Jenna out to get a universal remote control and programmed it to suit him. Why didn't we do that a year ago??!*#*!!

Love you all,
Kim

Out of ICU

Around noon he was moved out of ICU and is now back in a regular room. You can imagine how much better that made him feel. There was just so much activity there, he says he was never able to get sleep during the two day stay. He is really exhausted. All he wanted was a shower and sleep, oh, and of course something to eat. I've decided to go home this afternoon for the rest of the day, maybe that will make it easier for him to rest.

The pain is not quite as intense. He even postponed one dose of pain killer meds for a couple hours. Not sure how much longer he'll be staying in the hospital. So far nothing has even been said about that. Antibiotics are still being administered continuously.

More later,
Kim

What a Pain!

We were sure hoping and expecting to have Ray moved out of ICU today, but it didn't happen. He's still having the unbearable pain (left side of the face) that at times brings tears to his eyes. He's being given two different pain killers every 4-6 hours, but there is still that window of time that he's begging for more and can't have it. Now, you want to hear something weird, but it makes sense? Another CT scan was done last night still showing "nothing suspicious" and no signs of infection. This is what his infection specialist believes is going on. He does have a serious sinus infection, but because the white blood count is so low his body is unable to produce the pus/mucous that would ordinarily be present with an infection. Of course, he's been on antibiotics, so hopefully he'll get some relief soon.

He was given two more transfusions today; one of platelets and one of packed red blood cells. His appetite is as though he's putting in a full day's work. He's even requesting meals between meals. I think his body really is putting in a full day's work and then some.

In spite of it all, he never ceases to amaze me with his great attitude and strong faith. The nurses/staff all love him because he never gets upset and is always encouraging them by telling them all what a great job they're doing-even the janitors! Today several nurses from the 6th floor came to visit him and check up on him. Hopefully, tomorrow he'll be back on the 6th floor, his 2nd home for nearly a year now. Wow!

Love you all,
Kim

Back in ICU

Around 3:30 this morning we headed back to the hospital due to a high fever. We're getting this routine down pretty good by now. Just as we expected, blood tests, chest x-rays, etc. were done to try to find the cause of the fever. I was really thinking I should go back home around 6:30 instead of trying to sleep in the recliner in Ray's room. Thank God I didn't go home! Ray started to complain that he was freezing and began to shiver. I went to get another blanket for him, but knew something wasn't right when I got back. I immediately called for help and within seconds the whole place was in an whirlwind. The Rapid Response Team was called. He was in "septic shock." It didn't take long to stabilize him. But then of course we knew that meant ICU. Right now, I'm not sure how long he'll be there. He's mostly slept since he's been moved. I'm hoping to have some answers soon.

The only pain that he's been having is simliar to a sinus infection. But a CT scan was done yesterday on the sinuses and there was no sign of infection there or "anything suspicious."

I'm really worried about that man of mine. Please keep him in your prayers.

I'll try to keep you updated. I tried to post earlier from the hospital, but their public computers were down.

Love you all,
Kim

Discharged

When Ray was admitted Mon., we were told he would be there a minimum of 14 days. The Dr. today said since things are going so well, he could go home. He also said the meds he will be receiving over the next few days can easily be given as outpatient. Before leaving today he did need two more units of blood, which took FOREVER just to get started. We finally made it home late this evening, after being told around 8:00 this morning, "after two units of blood you can leave." I really should not be complaining. We are most grateful (Thank you, Jesus!) to have him back home so soon! His blood counts are still dangerously low, so obviously we have to be on the lookout for fever.

Britteny called to say she and her mom are going wedding dress shopping tomorrow afternoon and invited me to tag along. I just might do that!!

Love you all,
Kim

Going Well

Today is the third day of this round and things are going well. Ray even said this morning that he's surprised at how good he's feeling. However visitors now have to wear a mask while in his room, and he is no longer allowed to leave his room. The Dr. is taking every precaution possible to avoid an infection.

Otherwise there is not much else that is going on. He loves to have visitors and he still has his cell phone with him. I think he sees that as his connection to the outside world. Thanks for all the prayers and messages of care and concern. You really have no idea how much it means to our family. We offer daily prayers of thanksgiving for all those who are praying for us.

Love you all,
Kim

Monday Night Blog

The latest regimen of chemo drugs began this afternoon around 4:00. After finishing at the Dr. office around 11:00 this morning, we did stall for about three hours before going to the hospital. Ray wanted to go to the shop "to do a few things." He mostly just wandered around and did a little "tidying up." It was really hard for him to close and lock that door.

He was soon back to his cheerful self and didn't take long to settle into his hospital room. He told the charge nurse right away about his "special dietary needs"--lots of steak and potatoes!

Please keep him in your prayers. I try real hard not to worry; but I'm worried.

Love you all,
Kim

Now What?

We did get some of the results this morning from the biopsy taken on Monday. Ray now has a different type of leukemia. He started with AML and the diagnosis now is ALL. The unanswered question is, "Did the AML change, mutate or is this a secondary cancer?" We'll probably never know for sure. We do know that previous chemotherapy treatment is often times the blame for adult ALL. Children are more commonly diagnosed with ALL.

Supposedly it is very rare for AML to become ALL, more common is the other way around. Since it is so rare, the Dr. promises he'll be doing his homework over the weekend. (isn't that's reassuring?)

Where do we go from here?--we're not exactly sure. The Dr. will know more on Monday as to what the best plan of attack will be. He did assure us however that chemo will begin early next week, possibly on Monday and that it is not going to be easy since Ray's immune system is already compromised. Blood tests will be done tomorrow and Sunday and more transfusions if need be.

More later as I know more.
Kim

P.S. There's lots of good info online.

Waiting for Results

The Dr. decided yesterday that it was time for another bone marrow biopsy. The reason for the biopsy was due to the fact that Ray had received 12 transfusions during the previous 11 days and his blood counts remained at critically low levels. Causing most concern is the low platelet count and the body not responding to the platelet transfusions. We now have to wait for the results, but should have some preliminary results on Friday.


Having spent countless hours in the outpatient room receiving transfusions, as you can imagine Ray is sick of hearing all the Michael Jackson coverage and speculation about Sarah Palin's intentions. He's not able to concentrate on reading or other activities that require focused attention when he's feeling this weak and fatigued. Much like his counterparts that share the outpatient room with him, the TV helps pass the time.


We drove to Plainview this afternoon and ate lunch with Craig. Going places other than the hospital or Drs. office is always a good pick-me-up for him. Please keep him in your prayers. Thanks so much!


Love you all,
Kim

"Slow Recovery"

Those were the words today from the Dr. In spite of Ray having 7 transfusions of platelets(4) and packed red blood cells(3) since last Frday, his counts are still declining. So again today he had to have one more of each and will continue going to the hospital each day of the weekend for more blood tests to determine if he'll need even more transfusions. Needless to say, Ray was very discouraged after today's appt. The Dr. said it is taking longer for the marrow to recover from this last round of chemo.

The Dr. and his wonderful nurse (she really is a sweetheart) both gave him a good "talking to" about not letting this get him down. When I picked him up from the hospital this evening his spirits were much better.

Best wishes to everyone for a blessed and safe holiday.

Love you all,
Kim