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!!!!!!!!!