The earthly adventure ends

Late on December 10th, 2007, Stan went to the kingdom of heaven. He fought to the end and he will be my hero and love for ever.

Stan wanted no services.

If anyone would like,Stan would be honored if you made a donation to the Leukemia/Lymphoma Society (or to a charity of your choice) in his memory.

His loving family,Leslie (wife of 29 years) his son,Joshua and his daughter,Noelle,are trying to carry on the way Stan would have wanted,however the hole left in our hearts and in our home is often difficult to bear.

Sunday, November 25th

Yesterday, Stan had a seizure. He is now unresponsive . We are keeping him on IV meds and morphine to make sure he will not be in any pain. We are waiting to see what happens.

November 23rd

Although Stan says he feels better (and his mouth looks much better and his stomach feels good) he is more incoherent again. It is tough to be thankful--I am thankful that Stan feels better and really does not seem to mind being in the hospital and naps frequently,but I miss him--my life and my marriage will never be the same--it is difficult to realize this and move on, but somehow I will have to adapt.

Tuesday, November 20th

Stan seemed a little better today--mouth looked better,less diahrrea.His arms and legs are still quite swollen and we had to cut off his wedding ring today because his finger was turning blue--very sad. He does nap often and he seems reatful when he sleeps,so that is good.

Monday November 19th

Stan's GVHD is very persistent. The doctor feels that it will take Stan's body another 2 weeks at least to fight this. In the mean time,his steroids have been increased and his arms and legs are swollen. The antibiotics have also been increased so he won't "catch' anything else. Almost all of his medications are IV now because of the sores in his mouth (I thought they looked a little better today) and now Stan is receiving IV "ATP" (which is protein because he is unable to eat much food because his mouth and whole digestive tract are sore). Also ,he is on 24 hour IV morphine--to try to ease the pain of the GVHD--the doctor said tonight that the best thing Stan can do for now is to sleep so his body can try to repair itself. The morphine does help with that. So, I spend alot of time holding his hand and watching him sleep.(again,though,there is no involvement of his organs--they do blood and urine samples several times a day to watch this--so that much we are thankful for).

Saturday,November 17th

Stan's rash is looking better. His GVHD of the mouth and digestive tract are not better. The docs have increased his pain medication and his steroids and are hoping to see an improvement by Monday. The good news is that the GVHD has not gone to any of his organs--his kidneys and liver are fine despite all the medications he is on.(and his CAT scan of his stomach was fine too) His mental state is coherent,but he is so medicated that he cannot stay awake too long. I am trying to be positive, but as Thanksgiving approaches,it is sad to think that Stan will still be in the hospital.After this week,I will be back at work full time--so if anyone is able to visit Stan during the day--that would be appreciated to break up his day some until I can get there after school.

November 15th

Not much change today. Stan is on 24 hour morphine IV to try to help with the pain of the mouth sores. He said he felt better today---he was very sleepy (probably due to the morphine). the Dr thought the rash and mouth and eyes looked better,I did not see much difference from yesterday.

still November 14th

Stan's GVHD rash is getting better and his mental status is better also. His mouth sores and digestive tract are still problematic. The dr has upped his pain meds in the hopes that he will be able to eat more. Also today, Stan had "raki" (spelling?) and that seemed to give him some relief at least while the process was going on.
He had a slight fever this am --we don't know why--but to be safe, the doctors were doing some bloodwork and cultures and a chest xray today.

November 14th

Stan just can't shake the GVHD and along with that he is dealing with all the side effects of the GVHD drugs again. He is no worse,but progress is slow.

Sunday,November 11th

Stan is doing much better in terms of his coherence. He is still not able to be alone but he knows people when they visit and is taking interest in the news and sports again. Also, Stan still has his sense of humor throughout all these trying times.
He definitely has GVHD of the skin (rash) and digestive tract (sores in his mouth and throat). So his steroids (to fight GVHD) have been increased and now we have to watch his blood pressure again because of that. Also his anti-fungal medicine is back on again--his anti rejection meds have been lowered (a good thing) and his electrolytes are better today so he did not need as much IV meds today. His eyes bothered him this am, but luckily it turns out that he just has dry eye and the Dr gave him eye moistening drops and a cream that would help with the painfulness of dry eyes (the cream made his vision fuzzy, so walking was out today--he felt dizzy) He did walk around the floor yesterday with a walker. Tomorrow he should get OT and PT again. He will be in the hospital for at least a week until the GVHD clears up AND his blood levels even out again.

Saturday,November 10th

The lumbar puncture showed no infection,so that is good,but we still don't know what is causing all Stan's problems. The doctor did say that he may have the equivalent of a cold,but for Stan--it makes him very sick and weak. This seems to show true in that his electrolytes are all off and his red blood count was low too. He will most likely be in the hospital for another weak until all the bloodwork levels out a little and then we will see where he is mentally and physically at that time.
He HAS been more alert the past 2 days when he is awake.He went for occupational therapy yesterday.
His GVHD is back a little too---he has had an upset stomach and a little rash--the Dr is on that right away.
Stan DOES enjoy visitors for short periods of time--he recognizes everyone and can hold a little conversation--he just gets tired quickly.(he is in Albany Med,room D-470.

Thursday, November 8th

We got the results of some of Stan's tests. So far the CAT scans and the EEG are all fine--so it looks like no permanent neurological damage. Today,he had a successful lumbar puncture, so now we will wait to see if anything develops from those cultures. In the meantime, he has been more coherent today while he was awake. His electrolytes have been way off (probably due to all the IV fluids he gets and that his body is fighting "something". Tonight he is going to get some red blood cells (again because his body cannot fight an infection and restore all his blood after a transplant). His tremors continue--hopefully he will see physical therapy again tomorrow.

Tuesday,November 6th, Stan's Birthday

There is no real news today. Stan was a little more coherent today. He had an EEG and a physical therapy evaluation. We still don't have any idea what is going on--just more tests.

Monday, November 5th

No real news today. the doctors really have no idea what is causing Stan to have all these problems. He had another CAT scan today,this time the chest area and he had more blood tests. We are waiting for the results to know what is going on and how to proceed.
People can visit,but you never know what his mental status will be at that moment---sometimes he is better than others. He is in Albany Med in room D-470.

Sunday,November 4th

Stan's mental status was worse this morning as was his physical shaking,he refused to take his meds and he had a fever,so we went by ambulance to Albany Medical Center. He was admitted and is in room D-470. They have given him antibiotics in case the fever is from an infection. They did a CAT scan and they will do more tests tomorrow to see if all these symptoms are drug related or neurological.

Friday,Nov 2,2007

So today the Doctor agreed to take Stan completely off of two of the drugs which have so many detrimental side effects and to decrease the dose of the third drug. We have to increase a different drug,but he has been fine with that drug in the past. We are going to try to get him Physical therapy at home to help with walking and activities of daily living, and have the visiting nurse come in. Unfortunately, if his mental status does not improve with these changes, we have to look into where he will be when I go back to work. This is still a very stressful period of time for me---I like to know the plan and see results--everyday seems to bring new challenges.

Stan would welcome visitors now--afternoon/evening seem better than morning. (please,however,if you have even a sniffle--wait until you are well--his immune system is still very compromised)

Day 79

I am sorry I have not posted for a few days. Stan's tremors and incoherence were getting worse and so we decided to come HOME (to NY) where he can be in familiar surroundings and hopefully get him to function better. His blood levels are consistent (good), but we need to wean him off some of his meds whose side effects seem to be causing the tremors and mental problems.
Please no phone calls or visits yet until he becomes more stable at home--and we cannot accept any food items or flowers.
I will continue to post from home.

Day 76

While Stan's walking is a little better today,the mental acuity has worsened. The Doctors have no idea what could have caused this reversal.His bl0od work is looking good. He cannot be left alone at all--I am not sure what I am going to do .

Day 74 not agood day

Today was not a good day. Stan is talking gibberish again. this morning he tried to walk to the bathroom and his legs gave out (luckily I was right in back of him,so he did not fall,just sank to thefloor). I could not get him off of yhe bathroom floor for 5 hours. i gave him extra IV fluids and I finally got him back to bed. He is a little better tonight--ate some food,took his meds--we got to the bath 2 more times without falling, but---I WANT TO GO HOME!!!!!!!!!!

Day 73

We spoke to the Doctor just a short time ago and he told us that we could plan on going home (as long as there are no complications) on NOVEMBER 18th) (little did he know that I had already booked the plane tickets!!!!) Hooray!
Stan has a ways to go yet in terms of adjusting and decreasing his meds. He (unfortunately) is suffering many of the side effects of withdrawal from the steroids (low blood pressure,extreme weakness and fatigue,flu-like feelings,weak muscles and tremors of the hands and legs,and IRRITABLE!) BUT in spite of all this--it is still a step in the right direction--and that is going HOME!!
So, it is day 73 after the transplant,but we have 23 days to go!!!!

Day 71

Stan's blood pressure was really low today--we are pretty sure it is because now that he is almost off the steroids==he will no longer need any blood pressure medication--so he will not take any from now until Friday and the Dr will check it again on Friday when we come back to ATC. Also, steroids down to only ONE pill a day---hooray!! He is still on the 24 hour IV fluids,but that doesn't seem to bother him and ,that,too,will be re-evaluated on Friday. The dietitian was in today--everything looks good. The magnesium and potassium are good too.
I am still hoping we will be home in time for Thanksgiving.
The weather here certainly changed while I was away--now the days are in the 70's (up until now,we had only had nights in the 70's) and last night--it got down to 49 degrees.(must be a cold front).

Day 69

I have to start with the fact that I have the greatest kids on earth!!! It was sooooo great to see them over the past few days.
Josh has done an incredible job "keeping the home fires burning". It felt so good to be in my house and even better was the bear hug from Josh.
I saw Noelle's play! The four girls were wonderful--they made the audience both laugh and cry--and they got a(well-deserved) standing ovation.
Stan and my in-laws have had some minor challenges (like the Drs changed Stan's meds twice while they are there) but they have risen to the occasion each time! I talked to Stan and he seemed fine too! He is almost off his steroids and because of that his blood pressure is getting back to normal too,so now he has to slowly reduce his blood pressure medication.He is still on 24 hour IV fluids to keep his kidneys from getting too saturated with all his medications. The doctors will check it again on Wednesday when we go to the ATC.
I reeeeeealy hate to go back to Texas, but hopefully it won't be too much longer 9about another 4 weeks if all goes well (I am keeping all my fingers and toes crossed for NO MORE COMPLICATIONS!!!!!)
Talk to y'all from Texas tomorrow!

Day 64

Well, it is 10am in Texas.(90 degress and HUMID) We have been here at the ATC since 7am and they just came to get Stan for his first physical therapy eval. I am sure he will be exhausted when he gets back.I am so happy he will be getting some PT before we leave -he still has difficulty going up stairs and he has very little endurance-(-walking around the apartment complex-wipes him out for the rest of the night--we even have to take the elevator to get back up to our apartment) His brother and sister-in-law come in this evening--so he will have to take a nap this afternoon!!1
His creatinin serum level was high today---right now the Doctors are not too worried-(it probably means his meds are slowing down his liver/kidney function) ( hopefully it DOESN'T mean that he has GVHD of the liver--but the DR does NOT think this is the case)
-Stan will be cutting back on some of the meds anyhow today and the Dr told us to give him IV fluids for the next 24 hours and they will check all the levels on Friday when he is in for his regular appointment. All of this is such a balancing act of medicines!!
I will try to post a blog tomorrow from the apartment BUT then you will NOT see a blog again until next TUESDAY---not to worry--I will just be visiting Noelle and Josh and won't be posting while I am away.
until then............

Day 63

Tuesdays ,we now spend at the apartment. It is really great to have the whole day to “get things done” (things like laundry, cleaning, setting up the weeks’ meds) (such an exciting life!!!).
Last night we had huge thunderstorms and flash flooding, so it was an added relief not to have to get to the ATC today. The sidewalks were still covered with water when I got up this morning and the maintenance crew was out picking up the branches and leaves that had fallen during the storm. The temperature, today, is 93,hot and humid—that will be the trend for the next few days. Tonight’s walk will probably be short because Stan will tire more easily from the humidity.
We have an early day tomorrow –our appointment at the ATC is at 7:15am—so we will have to catch the 6:30 bus. That also means I will have to take Stan’s 7am meds with us and also he needs to have some food with his meds,so I’ll pack a snack too.
My in-laws are coming tomorrow afternoon/evening. Thursday will be their “in-service” to all Stan’s care—it is a bit daunting to anyone just seeing it for the first time. Some of the other wives and I “meet” in the laundry room and say how much we are amazed at all the “stuff” we have had to learn!Stan sleeps most of the days we don’t go to ATC/fatigue is part of the “cure” for this illness

Day 62

Yesterday (Sunday) I just could not get AOL to post our blog! Stan is still very weak and tired,but I guess that is to be expected. I am hoping that he will get a few times with physical therapy so that can help him to build up his strength.
Today, the Doctors have told us to decrease the steroids by one pills (yay!!!) and to add another magnesium pill and 2 potassium pills per day (which is also good because previously those would have been added IV).
The foscarnet (the every eight hour IV) will be reduced to once a day on Wednesday. Stan does have some "shaking of his hands" that is due to the anti-rejection drug (tacrolimus). that is a drug that Stan will have to take for at least 6 more months--the pharmacist is great--she looks at the levels everyday we are in the ATC and if we can reduce the number of tacrolimus pills or if we need to increase the number--she will call me on my cell phone so we don't have to wait for our next appointment.
Hopefully,once some of the drugs are lessened (esp the steroids and the foscarnet),all of his blood work will even out (the numbers have gone down just a little--but not enough to worry about or to necessitate giving transfusions).
I hope I will be avle to post a blog from the apartment tomorrow.

Day 60

Slow Saturday ,Stan had his usual infusions—he is getting the hang of doing most of them—he still has to master the “Gemstar Infusion Pump”.(but he has Sunday,Tuesday and Thursday to practice before I go away for 4 days.)
I walked to the drugstore today (about 1 and ½ miles) only to find that Stan’s new prescription will not be ready until Monday—oh well,the exercise won’t hurt me and at least it was not humid out today.
Up to this point—I have been taking it “one day at a time”,but today,I actually started to plan our Thanksgiving day meal! I am planning AHEAD!!!!!

Day 59

We met with the DR today--Stan's counts are not all in normal range,but are steady. The platelets are less than they would like,but the Dr thinks that is possibly due to one of his antibiotics and as of today,we are changing it. We asked about our departure date and while the Dr would not say definitively,he did say we could probably plan on the week of Thanksgiving--so we are right on target--HOORAY!!!!!

Day 58

First I want to say;
Thank you
Thank you
Thank you Thank you
Thank you
To everyone who has been commenting on the blog or emailing us for the past few months. You cannot imagine how much I look forward to reading these messages each day.Thank you also,for all the cards and prayers—Stan and I greatly appreciate them.
Today we had a leisurely day at the apartment. Stan spends a good part of these days nappimg, which helps his to build up his strength for the days we go to the ATC. He is also learning how to do some of the care of his CVC. Next Friday,I am going to Niagara Falls to see Noelle in her play and then I am going to visit Josh for a night and then fly back to Houston. My brother-in-law and sister-in-law are going to come and stat with Stan (they are angels!!!!!)By that time,Stan should not need the round the clock IV meds—only once per day.
We also got Stan some special socks to help keep down the swelling in his ankles and feet. We just got back from a walk around the apartment complex (where we met several other couples who also have had transplants and were getting their exercise in for the day) The temperatures are still in the 90’s during the days here, but go down to the 60’s at night—so walking now was quite pleasant. We are keeping our fingers crossed so Stan will keep on this positive track and we will be able to get home on schedule!!!

Day 57

We are in the ATC until 4pm today. Stan will be cutting back on his steroids as of today and cutting back on tacrolimus (only by .5 mg) He will begin taking more magneium by mouth (now up to 2 pills a day) (one of our "fellow transplant friends" takes 12 per day). And in 9 days, the IV drug that he now gets 3X per day--will only need to be given 1X per day. Slowly getting away from the IV meds and onto all meds by pills says to me ---we should be able to go home on the 100th day (which is November 22nd--Thanksgiving!!!) WE just have to keep Stan germ free until then !!!!

Day 56

Someone asked me what we will do with all of our “free time” now that Stan does not have to go to the ATC everyday. We don’t exactly have free time—he still has to have his IV treatments, but I do them at the apartment instead of having them done by the nurses at the ATC. So, he has one IV (Foscarnet) that he gets every 8 hours—each treatment is 2 and ½ hours long. He also has 2 other treatments that he gets once per day that are each 3 hours long (and cannot be given at the same time because the 2 drugs would interact).(so,last night I had to learn how to use an IV pump) Before and after each IV treatment, I have to flush the CVC lines with saline and heparin. He also has about 30 pills to take throughout the day. So we are still quite busy, but it is soooooo nice not to have to catch a bus to go to the ATC for 4-8 hours a day. He is still quite easily fatiqued, but getting better at walking and awake longer everyday!!!!(finally).

Day 55 3 steps forward

We had a long day in the ATC today (7 hours) but the last 10 minutes made the long day worth the wait. The Doctor told us that Stan will now come to the ATC only on Monday, Wednesday ,and Friday (down to 3 days instead of 7 days a week)YEA!!!!!!! I will give him his IV fluids at the apartment on the other days. Also, on Wednesday ,he will cut back on the steroids (not completely gone yet ,but going down) AND he is to start taking 1 magnesium pill a day (also a good sign—right now he gets magnesium in his IV fluids,so starting the pills means that the Drs are beginning to wean him off the IV) SO, 3 steps in the right direction in one day!!!!!!

Day 54

This is the first time we have been in the ATC on a Sunday--every other Sunday,Stan was in the hospital or in the emergency room--so today is a first.We are here for four hours today as he gets his IV fluids and anti-fungal and some electrolytes (we have to balance the electrolytes before we get any time off).We have started having him drink only bottled water and I have ordered a water-filter pitcher so that we won't take ANY chances on his getting into trouble with any bacteria or infection.Walking is still slow and a little uncertain,but he is walking longer and farther everyday.I am almost afraid to "jinx" our good luck by saying that THIS is the way he should be progressing and that we are "on the right track"

Day 53 with cancer-you get no vacations

I was barely aware that this was Columbus Day Weekend. We have pretty much the same schedule everyday--weekends included. We are in the ATC getting Stan's IV fluids--his bloodwork is coming back--his potassium and magnesium a little low from the anti-rejection and anti-viral meds he is on--but nothing alarming. He has not needed any transfusions of red or white blood cells nor any platelets--which is very good. We are hoping that on Monday, the Doctor will further lower his steroids and possibly give us a "day off" next week!

Day 52

Today was Stan's weekly IV-IG infusion. His electrolytes are still a little off because he is on 24 hour Foscarnet (the anti-viral med). The doctor thinks that we MAY be able to get a day off of coming to the ATC next week--that is certainly a step in the right direction--we will find out on Monday! He is walking a little better everyday.

Day 51 more than 1/2 way (a little)

Good day today. Stan's numbers are slowly coming up--as is his appetite and his blood pressure is coming down!

Day 50

Day 50----1/2 way (I hope). We are back in the outpatient clinic today. Stan is getting his anti-fugal drug and some potassium and magnesium--we will be here about 5-6 hours total. Maybe the next50 days will be easier than the last 50!

Day 49

Stan will be discharged from the hospital late this afternoon. He will still have some of the 'round the clock IV meds until Friday--but we can deal with that. Tomorrow ,we go back to the ATC as an outpatient (again) and hopefully for the remainder of our time in Houston.

Day 48

We don’t have much news today. When I left the hospital this evening, the Dr had not been in yet,so we are not sure if Stan will get out on Tuesday or not. The intern seemed to indicate that he would,so we are hopeful. Maybe I will have more news tomorrow.

Day 47

Today,Stan seems in better shape than yesterday. The confusion is slowly going away,he is more alert and awake for longer periods of time. The biopsy did show that he has graft versus host disease of the esophagus and digestive tract,but he is already on the steroids,so it is being treated--he is eating and has not been nauseous for 2 days now--a good sign.The Drs feel that part of his confusion was from the meds and part was from the encephalitis and part was that he took a longer time to recover from the sedation when he had the biopsy.(since he is clearly doing better,they have canceled the MRI which would have required sedation again).It would be great for him to be released by Tuesday--we will wait and see!!!

day 46

Stan is a little better today. We still don't have the results back from the biopsy--we should get those Monday. The Dr has changed his nausea medication to one that has less sedative side effects and they have lowered his steroids dose a little. Hopefully,this will help the confusion some. We are hoping that he will get out of the hospital next Tuesday or Wednesday.The rash is gone!

Day 45

Because Stan is still so confused --the Drs are running a series of tests to see why this continues. He has had an EEG and is scheduled for a MRI of the brain later today and at sometime they are going to try to do another lumbar puncture under sedation at a different spot to see if the herpes zoster virus is still in his system and effecting him.No results yet about yesterday's biopsy. In the meantime he is receiving meds to help the thrush and he is getting all his other meds IV.

Day 44

Stan is till in the hospital receiving IV fluids. He had a biopsy today to see if he has graft versus host disease of the digestive tract—no results yet. He is extremely confused and agitated due to the meds he is on to take care of the GVHD—it is such a Catch 22.

Day 43 back in the hospital again

So we had one good day yesterday and today I am ,again, sitting in the emergency room with Stan waiting for a room to open up in the hospital for him. He is dehydrated and has thrush in his throat and esophagus. Because he has both of these--they want to keep him in the hospital to give him all his meds IV. Seems we can't catch a break.

Day 42

I have not written much for the past few days because 1st: there was not much encouraging to write and 2nd: because the Drs were adjusting Stan’s medicines, I was carrying ALL of them back and forth to the hospital and adding the computer to that –was just too much to carry.Also,trying to use AOL in the apartment is frustrating-it keeps going off-line---so here is today’s “report”

Stan is doing MUCH better today. He is walking (pushing the wheelchair instead of riding in it),the Docs are slowly lowering the steroids,the blood pressure is coming down a little, and although his appetite is not quite back,he is drinking the “shakes” I make for him with the Boost fortified drinks.
This may be the turn forward!!! Let’s hope!!

Day 41

Stan's rash is better today,so now hecan cut down the number of steroid pills he takes from 12 per day to 9 per day. Still trying to get his blood pressure under control.

Day 40

I thought I would be so excited to reach day 40,but instead,I am just glad that Stan has finally stopped throwing up and was able to take his meds. Maybe day 50 will bring more joy.

Day 39

Stan has been terribly nauseous today.we have had to give him his meds twice bcause they came right back up the first time. Some of his blood work is still looking good--white blood count,platelets and neutrophyl absolute count --all in normal range---I guess we have to look at whatever positive we can.

Day 38

No change today. The Drs are worried that all the steroids that Stan is on will break down muscle tissue,so he will start physical therapy on Monday (we hope).

Day 37 a step backward

Stan got out of the hospital on Tuesday and the Docs are saying that if his rash does not get better or if he gets weaker, they will put him back in the hospital. SOOOO, first they are trying him ,now, on IV steroids again. They should help the rash,but they have so many other bad side effects (diabetes will come back, blood pressure will go up,weakened muscles,more emotional ,shorted temper etc) The steroids also lower the immune system making him more susceptible to infections again too. Tomorrow will be the deciding day.

One good thing ,though,both the bone marrow biopsy and the PET scan show no leukemia in the marrow or the organs!!!!!

Day 36

Stan is glad to be out of the hospital. He is still quite fatigued! Here is our schedule so you can see why it tires him out (I also have to fit showering,laundry and cleaning into each day) His Drs are still adjusting some of his meds to get the right dosage for him to get the benefits and not so many side effects.

Here is our schedule for the next week or so

-4am—take IV fluid out of refrigerator to warm to room temp

-5:30am start first IV fluid

-6:30am-glucose check (and insulin if needed)

- get breakfast ready

-7am give morning meds

-get ready to leave—put on first steroid cream

8am stop first IV meds ,flush tubing and start 2^nd IV med

8:10 put on 2^nd cream

8:20 leave for bus

9am arrive at MDAnderson

9;05 stop 2^nd IV med

9:15 go to give blood

9:30 give other meds

10am go to ATC for treatment

(treatments last 3-6 hours)

12 n test glucose-get lunch

3pm-return to apartment

3:15 start IV meds

3:20 put on steroid cream

3:50 put on 2^nd cream

4pm—give afternoon med

5pm test glucose

-make dinner

Take 2^nd IV meds out of refridge

6:45 stop IV meds

7pm give 2^nd IV meds

8-9pm give evening meds

8:30 Put on steroid cream

9pm put on 2^nd steroid cream

Take night IV meds out of fridge

11pm give night meds

And start night IV meds

1:30 am stop IV meds

4am take IV meds out of fridge

5:30 am---start all over again!

They weren't kidding when they said that Stan would need a caregiver 24/7!!!!!!

Day 35

It is 4:30pm Texas time and we are back in the apartment. It will take quite a bit of medical care to have Stan be able to be out of the hospital, but the Drs seemed to think he will do fine with me administering the IV drugs and cream treatment he needs round the clock for the next few days. We will also be going to the ATC again every day. He had a bit if trouble walking in from the curb to the apartment, but he should get stronger each day.

Day 34

I am not sure what to think of today. I guess the good news first
1) the biopsy showed NO leukemia cells in the marrow!!!!
2) the rash is slowly getting better
3) Stan may be discharged tomorrow (I have to have a class in using the medicine pumps at the apt,because Stan still needs 5 more days of round the clock antibiotics and anti-viral meds) (I am not sure if they are letting him out because he is doing well or if they just want him out because he has been a pain)(lol)
4) one of the measures the Drs look for is the "absolute neutrophyl count", Stan's is in the NORMAL range,

The one thing that is concerning to me is that the blood pressure meds are not right--in fact today Stan's blood pressure was way too low---so they are adjusting them again tonight and will keep checking it during the night and morning tomorrow.
So for me--it's back to Florence Nightingal tomorow!

Day 33

Today ,we have already walked 2 x ! Stan was awake longer this am before going back to nap this afternoon and he even watched part of the football game before he fell asleep (of course a football game always puts me to sleep).
They have changed his blood pressure meds this afternoon---so we will see how these meds work. Also,his feet were a little swollen,so they have given him lasiks. We were glad that (at least for now) he will stay on the steroid cream (we just have to make sure he gets it 4X a day).The Doctor said that a "little graft versus host disease" is actually good for a patient who has had an allo transplant like Stan, because it means that although it is attacking the skin cells,the donor cells will also attack any remaining leukemia cells. Stan had a chest xray today--no results yet.
I keep hoping that if I can keep him eating regularly and walking regularly and taking all his meds on schedule--that MAYBE we will begin an upward trend!

Day 32 the roller coaster ride continues

The skin biopsy (from the rash) is back and Stan does have acute graft vs host disease level 1, (acute meaning that it occurred within 100 days of the transplant,level 1 being the mildest case with Stan's skin rash) luckily it is being treated with a steroid topical cream . (many times GVHD is treated with oral steroids which further damage the immune system--the cream does not have that effect)
We continue to monitor his blood pressure and the Drs are still adjusting the blood pressure medicine.
He gets a little stronger each day, but he is still extremely fatigued (we HAVE gone for one walk today and will get out for a second before I leave tonight!!!).
I am anxious to get the test results back to see how well the graft has taken----waiting is NOT my strong suit anymore!!!!(not that I have a choice).
So, we wait.

Day 31

I am going to try to explain what has been going on with Stan (the Docs best guess) and tell where we stand right now.
The Docs believe that his infection was caused by some of the lingering herpes zoster virus that he has had since having the shingles 1 and 1/2 years ago. That virus is an opportunistic virus and attacks when the immune system is low (and of course Stan's is very low-to nonexistent). This time the virus attacked the cells in his brain,causing the headaches,nausea,vomiting,dizziness etc. It also caused him to have some motor problems and memory problems and mental acuity problems. These should all be temporary,but it will take time for him to regain all he lost.He had a physical therapy consult this am and they gave him some exercises to build up his stamina,but otherwise his motor skills are pretty good. He is still having some memory and mental acuity problems,but he gets a little more "with it" each day.(still has trouble following a conversation any more than 1 or 2 sentences long--but again-this should all get better.) His blood pressure continues to be high --and the docs are trying to adjust medication for that. He continues to get nauseous from time to time.
The better news is that his blood counts are still moving in the right direction--the docs are pleased and feel that there HAS been engraftment.In terms of the transplant--all they have been giving him (above the typical drugs) are occasional potassium and/or magnesium.Although they are still monitiring glucose,he has not needed insulin for a week. He has not had a headache in several days.We get more definitive results from his tests next week,but there is some good news.
Here is hoping that we ALL have a good weekend!

Day 30

Today and tomorrow, Stan has many tests scheduled. He had a chest xray this morning. This afternoon he will have a bone marrow biopsy and a skin biopsy (the skin biopsy is because he has a rash----it may be 1) an allergic reaction to some of the drugs he is on OR 2) an allergic reaction of his donor OR 3) graft vs host disease) Luckily—these are all treatable in one way or another.
Tomorrow he will have a PETCT and a CAT scan.
All these tests have been scheduled since the transplant—they are all routine at 30 days after transplant.
He has to stay in the hospital until sometime next week and we hope to have all the test results by early next week.
He gets A LITTLE better each day—but this will be a long way for him to gain back what he has lost with him being so sick. Just eating a meal tires him out.
Baby steps seems the way to go!

Day 29

This is one of those good news/bad news notes (not really bad,just disappointing)

The bad is that

1) Stan has to stay in the hospital until sometime next week because he has to complete the regimen of antibiotics and antivirals they started him on and there are too many and are taken too often to take as an out patient.

2) Although he is better, he is still very confused and has a hard time getting things straight and gets very frustrated and agitated, very easily( phone calls are still difficult for him to follow

3) 0

4) His blood pressure still needs to be regulated

The good is that

1) He IS getting better and slowly stronger (eating and walking a little more each day)

2) His white blood count is still in normal range, all other counts, though low, are going in the right direction and the Dr seems happy with them.

3) He will still have his bone marrow biopsy tomorrow and his PETCT done on Friday so by next week ,we will know what percent of his marrow is donor and what is still his.

So, we go on.

Some of you have said that you could not get on the blog to comment,please know that I GLADLY look forward to emails everyday and I like to respond to them,so here are my contacts again

leslieanne.wright@gmail.com

or

lwright@berlincentral.org (for my school buddies)

or call my cell (518) 339-3295

(while I cannot always talk on the phone when you call--I have always been able to receive voice mail and I try to respond to those,but sometimes don't get out of Stan's room until late at night)

or the apartment phone (713)667-1308

Day 28 hopefully on the RIGHT road to recovery

Although I have not spoken to all the Doctors yet today, Stan is doing better. He was up for about 2 hours this morning,he ate a little (and kept it down) and we hope to go for a small walk this afternoon when he gets up. They were unable to get any fluid when they did the spinal tap,but they believe he has a viral infection,so they are slowly taking him off the antibiotics and upping the anti-viral meds. He will probably be released from the hospital sometime tomorrow. He is also now on blood pressure medicine,so that should help too. I will probably update this later tonight when I get more info and get back to the apartment--but I wanted everyone to know that things are looking better and hopefully we will be on the road to recovery!!!!
Thank you for all your prayers!!!!!!!!!!

And thank you to everyone who writes on the blog or emails me---these have been my support during this stressful week---I look forward to reading them everyday!!!

Day 27

The Drs were unable to get any fluid during today's test.Stan is no better .but no worse today.I have to meet with the DRs tomorrow morning to see what to try next,

Day 26

Not much new to report. Stan is a little more alert today,but we are still awaiting tests to be done and reports of those tests, to know if he has a bacterial infection or a viral infection.Tests scheduled for tomorrow ---in the meantime he is still on many meds . Hopefully this will be a better week!

Day 25

The Doctors believe Stan has some kind of infection,but have not pinpointed what it is yet. He is on lots of meds to help just about any kind of infection. We should see some improvement in 48-72 hours

Day 24

Still waiting for test results. They won't all be in until the middle of next week.(he could not get trough the lumbar puncture today--soit is rescheduled for next Tuesday under sedation) In anticipation of the possibility of any kind of infection, they have Stan on anti-everything meds (antibiotics,anyi-fungal,anti-viral) At this point he mostly sleeps through the day and night.
I'll post again when I know anything

Day 23 Stan back in hospital

i am currently writing this blog from the emergency room (6pm Texas time) we are waiting for a room to open up for Stan. The doctors want to readmit him for some tests to see why he continues to have headaches--this is not the usual--so they mostly want to rule out viruses,etc. I obviously don't have even a room number yet. Hope fully we wil have more answers tomorrow.

Day 22

Today Stan had a headache in early morning that wentaway with medication (it doesn't always go away). We got some new meds to try for nausea,because the Drs feel that he may be getting confused and having hallucinations from the meds. He is still vrey sensitive to light,so we have a consult with the eye doctor tomorrow. His counts flutuate as expected. He was able to walk a little better today.
Tomorrow is another day.

Day 21

Another not very good day. Stan continues to be nauseous,headachy and shakey on his feet.(and the medication does not seem to last from one dose to the next).He is sleeping through his treatment again and will still probably be exhausted when we get back to the apartment.(which I think is to be expected,but Stan is very discouraged to feel sick).His counts are fluctuating,but the Doctors don't seem worried about that. They are going to try to adjust his meds to try to get rid of the headache and nausea.

I really hate hospitals and I hate Texas----I want to go home!

Day 20-Labor Day-1/5 th of the way there

Today is slightly better than yesterday(at least we aren't in the emergency room),but Stan is extremely fatigued.I think this is also causing him to have headaches (along with all the drugs) (and he is also combatting off and on nausea). He is very unsteady on his feet (luckily,in the hospital-there are many wheelchairs available). He is sleeping through his 3 hour treatment which is probably the best way for him to cope today. Blood counts are the same.

Day 19 yuck

I am going to start with the good news---we are back in the apartment and Stan's blood is still looking good.
We did not start the day out well however. Last night,Stan got a fever and started vomitting--he seemed a little better and slept from 11pm til 5am, but woke up with the fever and vomiting again this morning. So we headed for the emergency room at 6am. There he was given IV meds for the nausea and headache and he was rehydrated. We still have no idea why he became ill. As I said,(after11 hours in the ER) we are back in th apt,but Stan is still under the weather,but no fever and no vomiting.
Hopefully,tomorrow will be a better day.

Day 18 boring and bald

Today's numbers are still looking good. As you can see in the picture,Stan has successfully lost ALL of his hair--he even has that shine bouncing off the top of his head.














The other pictures are of fish(duh) .They are a few of the many aquariums they have in the part of the hospital aptly named "The Aquarium". This is where we enter the building to go to any of the clinic appointments(such as to have blood drawn or for Stan's treatments in the ATC. Today's treatment is magnesium and the drug to help prevent CMV virus (I cannot begin to spell it).Because it is the weekend, this part of the hospital is very quiet. Tomorrow we have more of the same, but our appointment tomorrow is at 7am--early for us to get here.
Hopefully,later today,after we get back to the apartment and Stan has a chance to rest--we will go to get some groceries (this will be weather permitting as there is a 50% chance of thunderstorms this afternoon/evening)
Another day closer to home!!!!!!!!!

Day 17 Stem Cell Transplants nad the Stock Market

This is a picture of the metal tree sculpture that is on the escalator landing where we go to get Stan's bloodwork done . Some of you (or most of you) may wonder what stem cell transplants and the stock market have in common--well quite a bit actually.First, I am going to give you some stock market tips. BUY stock in HAND SANITIZER (like Purell) and also ALCOHOL PREPS--why, because Stan and I use so many everyday--and there are thousnads of people like us, so the demand for these products will continue to be great. Also, BUY stock in CLAIROL--why,because with all the stress here ,it will take vast amounts of Clairol to get rid of all my grey hair.
Like playing the stock market,getting a stem cell transplant is a risky, roller coaster business. You do your research, find a good investor/doctor,dedicate time and money and hope in your investment, follow the progress,try do to everything right, and hope for the best. Unfortunately,like the stock market, your company can crash with no warning (as any one can get Graft versus Host disease on day 99).So ,we hope we will keep our "upward trend" in Stan's health.
Today, his numbers still look good. The Doctors are watching his creatinine serum count (not an emergency) his counts are still in the normal range,but because Stan is on so many medications,they like the count to be low-normal---to make sure there is no damage to his kidneys. Good news--Stan is now off of the steroids and the extra antibiotic. His glucose levels have been good and we are hoping that we will only have to continue to monitor them for another week. We are anticipating getting a day "off" next Thursday--we will administer his treatment in the apartment and will not have to make the trip to the hospital.
Our next "big mile-marker" is on Day 30,which is September 13th. On that day, Stan has another bone marrow biopsy to see how many of the donor;s cells are in his marrow compared to how many of Stan's cells are still there. We are rooting for the donor!!!!
So, we hope you all have a great Labor Day Weekend.
We love you and miss you all,
Leslie and Stan

Day 16 counts and pictures O' the day

Today's pictures are taken at our new "daily assignment" ,the ATC. The first is a view of the park below Stan's treatment room,the 2nd is a picture of one of the treatment rooms. The third picture was taken from Stan's treatment room and is a view of the skybridge going to the Mays Clinic (on the right) and the Rotary House Hotel (that is attached to the hospital).Lastly, is a view from the same window looking in the other direction--every building you see is part of the Texas Medical Center (part is MD Anderson, part is Children's Hospital, part Methodist Hospital, part St. Luke's Hospital,and several others)
As far as Stan's counts --his platelets and white blood cells are in the NORMAL range,red blood cells are up a little from yesterday (the doctors told us today that the red blood cells may not get back to normal range for months,so not to worry. Potassium was a little low today--but all he needs is a pill for today to counteract that.
So, we were told that we are "nice and boring" and at this point ,that is the best we can be!!! yipee!

Day 15--the next phase

We now begin the "outpatient phase " of Stan's transplant. While it is great that he does not have to "stay" in the hospital--we are still here at the hospital for hours everyday. (and, for me ,it is very scary, that I am really in charge of all his meds and insulin shots and meals and exercise and Dr appointments and keeping his CVC clean and laundry etc.,etc.,etc,.!!!)
His blood counts continue to look a little better each day. Today he is receiving an IV bag of magnesium (his body looses alot of magnesium because of the drug Tacrolemus (which helps his body not to reject the new cells) and he is also getting an anti-fungal drug to make sure his CVC does not get infected--we will be here for about 3-6 hours today. Also, we will meet with his "team" which consists of a DR (Dr Kourhi) and his physicians assistant and a pharmacist. Later this week he will get IV-IGG to boost his immune system. We are also told that next week he will begin physical therapy to begin to build up his body slowly.
The outpatient clinic is on the 10th floor of the main building and is quite nice. They have a little coffee/tea area and there are juices and snacks available at the nurses' station for the patients. The food service also comes around for patient's lunch and dinner orders (which are free for the patients) (I will post some pictures tomorrow)
While here today--we had a magnificent view of a thunder and lightning storm going through Houston.
Talk to y'all tomorrow!

Day 14 "Stan is in the house" (actually in the apartment

We were told at 11am that Stan would be discharged from the hospital today--and exactly 6HOURS later--we were finally on our way to the apartment.We got in just in time to miss the thunderstorms and flash floods on the roadways.
The Doctors are guardedly optimistic--they say "at this time--allthings look good". We now need to do everything in our power to keep Stan from getting any infections. We were told that approximately 50% of all Stem cell transplant patients get Graft versus Host disease. So far ,Stan has had no symptoms (but he is still on steroids and antibiotics). We had to pick up 18 bottles of medicine from the pharmacy before we left the hospital--you can imagine how trying it is to make sure Stan gets all the right meds at the right time (and we are still testing his blood glucose 4X per day and giving insulin as needed.)
We also found out today that I will be learning togive Stan his IV meds in a few weeks (yipeee)(I do not know why they are mistaking me for a nurse-type person!)
For tomorrow,we have to be back at the hospital early for Stan to give a blood sample and the he will be in th ATC (ambulatory treatment center) for 4-6 hours having infusions of magnesium and IV-IGG and any other fluids he may need. This will be our schedule for the next two weeks. If he is doing well, we may get a weekend off in September.
Stan wants to thank EVERYONE for all your prayers, good thoughts, calls, emails and cards--they mean so much. This is much harder than we can explain and you are all making it possible to give Stan another chance at life.
He also continues to lose clumps of hair at a time. I offered to pull out strategic clumps to make a design on his head. Soon he will be shiny and bald--his suggestion is that maybe he could sell advertising space on his new glossy finish head. Any takers?!?!
Until tomorrow--we love you all!

Leslie and Stan

Day 13---Stan is getting "sprung" tomorrow

Day13 Here is Stan saying"good-bye to his companion.
'the pole" Today the doctors came in and said that Stan would be released from the hospital TOMORROW!!!! (which is a week earlier than we expected). All his counts are going in the right direction--the extra fluid is coming off,he is on all meds by mouth and has not had a headache in 24 hours. We still do have a few things to do before he gets to leave. Today we watched videos about diabetes and we will be having a class this afternoon about his diet and how to use the monitor for his blood glucose levels and how to give insulin shots. (hopefully the diabetes will go away once he is off the steroids---they are aiming for Friday for all steroids to be done). Also, he has to have his 3 prong port (CVC) exchanged for a 2 prong port. We also have to get prescriptions and all the meds and supplies that Stan will need (quite a list!) He also has to get rid of his "pole".

SOOOOO-as of TUESDAY,AUGUST 28th--do not call the hospital room number------
use the apartment # 713-667-1308
or
my cell # 518-339-3295

On a final note for today---NOW Stan is loosing his hair---new pictures to follow tomorrow!

Day 12 Numbers

I have never paid a lot of notice to how much we use numbers in our lives. This trip to Texas has opened my eyes.
Before we left home,we needed dates and times to leave--all numbers. We had our flight number and gate number,our arrival time.
Once in Texas,we had to learn our building number ,our apartment number,our new phone number,our address and new zip code number. Then,I had to remember Stan;s floor number and room number and his phone number.
Since his transplant,we are watching all his blood count numbers,and his input and output numbers, his medicine dosage numbers and now with the drug-induced diabetes--his glucose numbers.
Stan's white blood counts is now in the normal range nad his red blood cells and platelets are increasing everyday.We are possibly looking at a discharge day of Wednesday----if "all the numbers look good".

Day 11 a better outlook

Some good news--Stan's doctors were in this am and his white blood cell count is in the NORMAL RANGE!!! other counts are coming along,slowly,but surely. On Monday,(if we can resolve a couple of issues that I will explain soon)Stan will begin "transitioning" from IV meds to medicines by mouth in anticipation of being discharged from the hospital sometime next week. He did have some problems this morning with shortness of breath--the doctors jumped on it--did an EKG and chest xray--both looked good--the problem seems to be that Stan is retaining too much fluid and that is causing the breathing problems. He is on lasix here (IV) ,but we need to resolve this before he can be discharged. Another good development--he is off the oxygen--his count is 94-96 on his own. Also, he did not need any insulin this morning--another good thing.
So, we are hopeful today. Stan (of course) is looking forward to getting out of the hospital (although we will becoming in to the APC (ambulatory patient clinic) everyday for at least 2 weeks),but we are moving in the right direction.
On a different note--I know some people have been complaining about the oppressive het at home--today,in Houston--it was 87 at 8am and is expected to reach 96 by afternoon--the humidity is also 90%--so with the heat index--it feels like 104! Sooooo---I am giving you all permission to remind me of this when I am get home and am complaining of the cold in December!

Day 10 mixed messages

Friday, Stan is better today than he has been in the past two days. He has had some complications that are medicine induced. He has something called engraftment syndrome (ES) .This is unusual in allo transplants,but is brought on by the drug neupigon (that is used to stimulate cell growth. One of the worries with ES is pullmanary edema---Stan had a chest exray last night and there was evidence of a little fluid around the lungs. The best treatment for ES and its complications is to receive steroids, lasix, and intravenous antibiotics and to be on oxygen--which Stan began last night. HE is feeling better today, but one of the side effects of this treatment is to develop temporary diabetes-----so,now Stan is also getting insulin shots.
His white blood counts and platelet counts are still coming up slowly,his red blood count and hemoglobin have not changed.
So----all in all I guess things are better,but man oh man is this an anxiety producing 3 days!!!!

Day 9 A difficult day

.Today has been another roller coaster day. Stan was very sick this am with a migraine headache and vomitting. He got some meds,but they made him extremely confused ,tired, and unintelligible. He also seems to be retaining a lot of fluid, so more lasiks were given (which work, but allow him no rest for running to the bathroom every 1/2 hour). His oxygen levels have been low all day, so they are taking him for a chest xray tonight and giving him another antibiotic to make sure no pneumonia sets in. His white count was up again today which we thought was a good sign, but now they say he may have something called"engraftment syndrome" He will get some steroids to help that---unfortunately the side effects of this steroid are feeling more anxious,more emotional ,and less able to sleep---all 3 things that he doesn't need!!!!
So we wait for all the meds to do their work and hope for better newa and a better day tomorrow. These are the times I miss home the most----just waiting for what will happen next.

Day 8-not so great

It is only noon, and today has already been difficult. Stan is experiencing quite a bit of pain---muscle spasms in his spine and what seems even more upsetting to him ,is that he is confused. Some of his blood counts have come up just a little and the Doctors say that the pain is often indicative of the new cells working and that this is a good sign. (from my point of view--it is very hard to see my husband in any pain). The other good news is that because there has been this slight increase in platelets,red blood cells and white blood cells, they have taken him off his neupigen(sp?) shots (which were to stimulate new cell growth). He is resting now---hopefully he'll be in less pain when he awakens.

Day 7

Day 7 ,Stan is still doing well,(although if you have read his blog or talked to him on the phone--you know that he is a bit befuddled at times). Today he has gotten a bag of platelets and he will be getting a bag of red blood cells this afternoon (which they say is not unexpected).We took a short walk this morning and will walk again later today.So, we are still pleased with his progress.
Today's pictures I am titling "around the town". The first is one that Stan wanted me to put on--it is the view from his window.
The second picture is of a "bayou" (I know--to us northerners--it looks like a water ditch) but the reason I took a picture is so you can imagine how MUCH rain there was last week. The rain filled the bayou and was all the way up the grassy sides and STILL 2 to 4 feet of water covering the roads! That is a lot of water ! And although I feel terrible about Mexico--I am very glad that we will not be seeing Hurricane Dean!
The third picture is one of the Children's Hospital transport vans. They take children and their families to any of the nearby cancer centers. The neat thing is that they are all decorated with art by local children--so the buses are very colorful!
The last picture (is not very good) shows one of the Metro buses (you can sort of see it attached to the cable at the top) these travel around the Medical center and to downtown Houston.
So for today---I will sign off----Tomorrow morning,I am going grocery shopping with the wife of another transplant patient who we met on the shuttle and who we continue to see as we walk here on the floor. Joan--has a car here in Texas (although she uses the shuttle to get back and forth from the hospital because the cost of and parking availability are prohibitive),. I will pick up some more food,but also I need to begin to get some of the cleaning supplies I will need when Stan comes to the apartment----in other words--since I don't have to walk--I am going to buy the heavy stuff tomorrow!
OH--and Happy Birthday to my brother tomorrow!!!!

TIME IS ON MY SIDE

When we started this blog, I wanted it to be a source of conversation and information respecting stem cell transplants (SCT) and my walk of faith. However, I think it has taken on a life of its own perhaps fueled by some of my recent postings. This leads me to explain what has been going on with me. I have an attention spanned of two minutes. It seems that in the middle of the night I wake-up and go to the bathroom to, I will not say the p__ word, I'll just refer to it as the P word. I get back in bed and fall to sleep for what seems comparable to 60-90 minutes, only to find that I have actually sleep for just 2 minutes. So all of my night-time posts should be discounted for lack of a restful based experience. Consequently, I'm sleep deprived during the daytime and those post are questionable as well. Bumber!! Perhaps this is a cute way of saying, I am having some sleep and fatigue issues. The SCT docs have reduced the dosage of several meds and added a sleeping pill at night. We'll see how much this helps the situation. I hope I don't fall asleep on my way to or in the bathroom.

I have been contemplating a post on "timing". You know the phase, "timing is everything". There are several things going on in my mind and perhaps in reality too that lend themselves to such a discussion. It's late and I need to go to bed. If this is still posted when I awake, then I really wrote it. If not, it was just another one of those two minute dreams.

Stan

Day 6 pictures of Stan

Hi all, I thought everyone would want to see how well Stan looks 6 days after his transplant. First picture, he is standing in his room, next picture: he is with his constant companion--the IV pole. Then you see him all suited up outside his room getting ready for our walk. And 4th picture he is with 2 of the great staff who work here at MD Anderson. The nurses, aides, cleaning and food staff get moved to a different one of the four pods everyday, but they ask about you and encourage you as you walk around everyday and remember our names!!!
I just wanted all of our friends and family to see that Stan is ALIVE and WELL !

Day 6

Here are some pictures of MDAnderson. The first is (obviously) the fountain at the entrance of the hospital. The second is a view of the main hospital. Stan's room is on the far left of the building on the 11th floor.




Here is a picture of the "Sky Bridge" that connects the main hospital and the Mays Clinic (where many of the tests take place) There is a view form the outside and inside the bridge. They also have golf carts to take patients across the bridge.
The last picture is a "Tree Sculpture" one of the items that MD Anderson uses to identify different parts of the building.
Today is day 6. Stan's blood count continues to plummet (as expected) He does seem to have a little more energy today! We walked this morning and he is still awake ( since 8am) (it is now 1:30pm). One of the other transplant patients that we see when we walk (Fred) told us today that he may be going home soon and he is at Day 13--so we are hopeful that if Stan's blood counts begin to go up--and he continues to do as well as he has been--that he may get out of the hospital sooner than 3 weeks (and ultimately get home sooner than 100 days!!!!) We can only take it one day at a time ! We have met some very nice people as we walk who are also here for a transplant. Since everyone wears masks and gloves (and sometimes gowns) as we walk--you can only see peoples' eyes and can't tell if they are smiling or not, but we all say "Hello", ask how people are feeling each day, and congratulate each person for walking! (5 times around all 4 pods on the 11th floor is 1 mile) Right now every room on the floor is occupied (that means 52 people are somewhere in the process of a bone marrow transplant ) and there are 26 more rooms upstairs for those patients who need an even more sterile environment. This truly is an amazing place!!! So, until tomorrow--have a good day!

Day 5--Sunday

Since today is Sunday, here are some pictures for Joe (who we have spent dining with on numerous Sunday mornings). Joe, Stan took these first two pictures just for you!!! These were all taken at a little boardwalk village on the Galveston Bay, called Kemah. Also, Frank and Louise, your boat would have been right in place here too! We walked up and down the boardwalk 2 days before Stan went into the hospital. And we ate at a boardwalk restaurant--it was very nice. They also have rides and the usual boardwalk games and a large marina (pictures to follow on another day).
Stan continues to be okay--mornings seem toughest for him--he does not sleep well at night, so he is EXTREMELY tired in the morning and often goes back to bed after he eats breakfast. He does much better in late afternoon and evening--that is when we/he walks and when phone calls are much appreciated. I usually stay at the hospital until the last shuttle back to the apartment at 7:30pm.
We have been watching the weather channel and it looks (now) that Hurricane Dean will hit further south than Houston--thank goodness!(but we will continue to follow its path.)

Saturday--Day 4--still good!

This picture is for Nobe--she loves Target--down here she could one-stop shopping--food,housewares and (of course) bathing suits--all in one store.
Stan is still doing quite well--his blood counts are all very low (which is to be expected) he is doing everything right (no pun intended)---walking, showering with the special anti-bacterial soap,rinsing his mouth frequently with special mouth-wash,using the gadget to keep his lungs working well, and eating well.The only thing the Docs are looking at right now is an irritated spot on his stomach where he received an injection of meds to increase his production of neutrophylls (sp?). Since the first shot, though , he is now getting the same injection in his arm with no side effects--so that is good. This week (on Tuesday) begins his 3rd week in the hospital.Hopefully we will see an increase in blood parts by the end of the week.
At te apartment, I have had a little excitement,yesterday (Sat) I had no water for 8 hours and when it did come back--it was brown. So, last night I boiled water and put it in any container I could find so I would have water to use. (because of the possibility of Hurricane Dean coming--it is hard to find water to buy) So, for now at least ,I am, set and today I have clear and plentiful water in the bathroom, but just trickle of water in the kitchen and no hot water in the kitchen. I'll bet this will be al better by Monday.

apartment pictures

Here are some more pictures of our apartment complex. This top picture is the view of the pool from our window(there are 5 pools in the whole complex). The 2nd is the apartment office. Third is the walkway to our apartment and the last is the road that enters our complex. As you can see, the roads are either pebbled or brick as are the walkways. They do a very nice job of keeping up all the landscaping. Also, as you can see, each apartment building is 3 stories tall.
There are elevators in each building,but ours is not near our apartment,so I tend to use the stairs (I am only up one flight).Each building has a small laundry room on the first floor as well. (4 washers and 6 dryers). So,for now, hope y'all have a great weekend!

Day 3--Still doing well

Here are some pictures of a great Bar-B-Que restaurant we ate at before Stan went into the hospital. It is called Goode Co. and it has incredibly "good" food. The middle picture is the counter where you order your food--things like pulled pork,jambalaya,cornbread, spoon bread ,BBQbeef briscuit, okra,pecan pie,etc. There is also an old soda chest from which you pick out you bottle of soda or beer. The first picture got a little cut off, but you can sort of see the buffalo head (yes--a REAL One) over the juke box. And the 3rd picture is of the armadillo that decorates the outside seating. On Friday and Saturday nights,they have a band and people dance under the awning.We had a great meal here, but Stan will not be able to eat this kind of prepared food for quite some time again. He can only have food I prepare for him,or individually packaged microwave meals. (I guess it is a good thing that he likes my cooking!)
On DAY 3, Stan is doing still quite well---he says he feels "stoned" quite a bit of the time because of all his meds--but the Drs and nurses seem pleased with him so far. We are told that those patients who walk do well and those that don't walk have the hardest time. We have to schedule Stan's walking when I am at the hospital or when he does not feel "stoned"--(falling could be fatal). So, we certainly hope that he continues to progress this way---we will be watching next week very closely for signs(bad signs) of Graft versus Host disease or signs (good signs) that his blood counts are coming back .