“We measure progress in weeks” Day +31

Karen again. Tony is progressing. We have not updated in a few days, because the progress Tony is experiencing is incremental by day. But from 1 week ago, when he was re-admitted, he is certainly improved, but not at all back to what he was when he was initially released. His eyes are slightly better, his hands are getting usable again, but his “gut” is turbulent.

Doctor S sees him staying in the hospital another week, maybe a little longer. We'll update again in a few days! Keep fingers crossed for continued forward progress – measured weekly! :)

Care-giving too well??? (Day +26)

There is such a thing as being too good at taking care of someone. Or so the Doctors are telling us. Apparently, if Mom and I were not such good caretakers, the Mayo would have had Tony back in-patient several days sooner. This did not make Mom and I very happy when we heard it yesterday. In fact, we cried. We feel like we made the situation Tony is dealing with last longer because the doctors had so much faith in us. We made it worse.

OK, we know that is not REALLY true, but...

Tony has been In-patient now for 2 days. The doctor is quite sure we will be seeing progress, Tony will be feeling progress, but it is going to be SLOW! Even now, when Dr. S and our PA look in Tony's mouth, they can see active healing and this is good!! However, we are ministering to Tony most of the time that we are at the hospital with him. He has large amounts of liquid coming out of his eyes that needs to be cleaned away, gently, and then he has 2 drops and 1 salve to put in his eyes. (we can see improvement there since Friday) Then his lips are cracked and ulcerated, so we clean those, also gently, and apply a vitamin salve. (we see improvement there since Friday as well) He is getting several salves on various parts of his body and a wound care specialist is looking at an additional one for some painful sores Tony has in unmentionable places. So, we are lubing him up several times throughout the day. The Doctor also says his skin rashes look improved. Again, the improvements we see will be incremental and slow, but improvement none the less!

He will be on IV fluids and nutrition for at least another 2 days, if not more. Initially, I had said he would be in the hospital 'til about Friday, but its possible it will be longer. We will see.

Our big drama today was about an enema. Tony is going to have some scopes done- upper and lower GI- and normal procedures are to get an enema before hand. Well, one of Tony's unmentionable places is where an enema would be administered and where the results would come out. This is not the time for additional, painful things to be done to that area. So, we all were stressing out for part of the day because the GI Doctor seemed to be insisting on the enema and Dr. S. had told us earlier that is was not necessary. Sooooo, Dr. S. to the rescue! No need to put Tony (and us) through such a potentially painful and embarrassing procedure. So, now we just need to deal with the possible pain and discomfort of the GI scope invading that oh so painful and private region! :)

One last thing - check out the number of pumps and bags and tubing running into Tony!

Day +24:

Well, we were told it was possible that additional in-patient stays would likely be necessary. Today, that became true. For no “bad,” scary reason, Tony's Doctor decided to admit him today. She thinks he'll be in the hospital 'til Friday. This is Tony's “real” doctor, Dr. S. We LOVE her!!

OK, here's the story. We mentioned recently that Tony has mild Graft v Host disease. Well, now it is moderate. Still nothing for alarm. We went for our normal appointment today and learned that Dr. S. is the Doctor for this coming week. She planned on stopping in to see Tony while he was there. The nurse determined that the sores in Tony's mouth are blistering. For the past 2 days, Tony has not wanted much to eat AT ALL and has had little to drink. So, a few hours into the visit, Dr. S. came in. She did a physical exam and spoke to Tony quite a bit and determined that the best place for Tony is in the hospital. She thinks he might have developed GvH in his “gut” and so she wants him to be on IV fluids and IV nutrition. (For you healthcare people out there, that is Total Parenteral Nutrition) (for you non-healthcare people out there what that means is this: All of Tony's liquids and foods will be bypassing his stomach and even his intestines and will be going straight to his veins.) This will give his “gut” a chance to relax. Also, then, Tony will be receiving almost NO medicine orally. Once again, to give his “gut” a chance to take a vacation. The goal with this hospital stay is just to give his body a break so it can focus on healing. We are hoping he will take every opportunity to use the medicine and skills of the nurses to do just that!

As for Mom and I. It is almost a relief because hard as we tried, we were not getting everything he needed into or onto him. Its a fine balance between pestering and caring. Now the Mayo can deal with that balance for a few days.

Thanks again to all for your support, seen and unseen. It means more than you can possibly know.  

Day +22

(Karen here) Most of you know that my Mother-in-law is in town to help Tony and I with this scary first few weeks. In some ways, Tony and I are barley holding on. Without my mother-in-law, I'd be in a loony bin and Tony would be in the hospital. I am working. She is going to the appointments with Tony, administering his medicine, talking with the doctors and nurses, feeding him and keeping herself (and us) sane. So, a big shout out from Tony and I for such a remarkable, loving Mother (-in-law)!

Tony mentioned yesterday that he would like you all to know a few things. First of all, as of 7:30 this evening, Tony is on 27 prescriptions (not including infusions from the Mayo) and various over the counter aids. Many of you are probably saying “WHAT?!?” Yes, 27 different medicines, one of which is 7 pills per dose. This leads me dramatically into the second thing we wanted to mention. There are several mild to moderate things wrong with Tony right now. My Mother-in-law really wants to be sure all of you avid readers out there have a better understanding of the challenges Tony is facing. OK here goes:

1: The skin rashes, you all know about.

2: Graft vs Host disease causing Mouth and throat sores.

3: Graft vs Host disease causing excessive, sticky discharge from the eyes resulting in mild vision impairment.

4: Graft vs Host disease affecting the nerve endings in his hands.

5: A skin Biopsy to rule out anything not Graft vs Host disease causing

6: Elevated Liver enzymes causing them to keep a VERY careful eye on it resulting in the tweaking of his medicines every few days.

7: We won't go into all the other, littler predicaments.

Now, this might be a little bit of a downer after yesterday's celebratory air to the blog, but we keep telling everyone that Tony is “Ok” or “doing fine” while we are dealing with so much. We think its important for our loved ones to have a better understanding of all this.

Thanks – Love you all - :) Karen and Tony

Day +21

Hi! Karen again! Tony is still doing OK. He just has minimal energy levels.

The type of challenge Tony and I are facing really calls for a positive attitude. We work hard to see the good side in each stage of this process. You guys help us too, with your prayers, vibes, thoughts, well wishes and such. A friend of ours helped us be positive yesterday!  He pointed out that - 

We hit day +20 yesterday!! That's 20% of the way through the truly hazardous part of this transplant. Wooo, hooo. 1/5 of the way there! Everyone take a quick minute to breathe a sigh of relief, do a little jump of celebration, and raise your eyes up to heaven in appropriation.

OK, now, what are you thinking? Cerebrating already??? Who gave you the idea it was time for that? We still have 80% of this trip ahead of us. Back to work!! Start the positive energy highway back up again!

Thank you all – Love you all = Karen and Tony.

Day +18 - What it means to be “Home Again”

Hey everyone – this is Karen. Tony has been home for about 48 hours. 

We wanted to clarify something with all of you. Since we said Tony would be coming home/came home, some of our loved ones have said “good, then you're done, right?” We have to reply with a resounding “NO.” Being 48 hours into this “home again” situation, I can tell you all it has really only just begun. The pressure and tension is so much on us at home now instead of the folks at the Mayo. Tony has had a SUPER day – Friday, and a terrible day – Saturday thru Sunday morning. We HAVE to go back to Mayo everyday so they can take his blood, give him supplements like Magnesium (because his anti-rejection drug uses up whats in his body) and fluids and things like Prednisone via IV. Each day, the Nurses and Doctors need to “read” Tony's blood results and “look at and touch” Tony to figure out how to keep him healthy and comfortable. These next few weeks are going to be VERY difficult. We have a lot of info coming at us from the medical people, a lot of questions to answer, and the constant worry.

Overall, Tony is doing well. Friday night, he began to develop a rash on his torso and his hands felt funny. Last night, his hands got a lot worse. He said it feels like he has sunburn under the skin.

The Doctors and Nurses think this rash is probably a little bit of Graft versus Host (GvH) disease. (This is where Tony's body and the new Stem Cells clash a little bit because they are not biologically the same.) A little bit of GvH disease is actually good. I won't explain it perfectly but think of it this way: The New Stem Cells inside Tony NEED to go through something of a “Boot Camp” as they settle inside of him. The doctors say that these transplants go SO MUCH better when the body and the new cells fight with each other a teensy bit – at the beginning! So, Tony has a rash and mostly cannot use his hands right now. He received salve yesterday and high dose prednisone today. He is perking up just a bit and he got the prednisone about 4 hours ago.

I have said to myself since this began that we just have to take one day at a time and that is true now more than ever. Right now, this journey feels like the path of a screw. We are slowly spinning in tighter and tighter. The worry, stress and pressure feel like that right now. One day at a time. Some days will be pressure and worry filled, others will be like exhaling after holding our breathe too long. As time passes, we'll have more days that are exhales than winding screws.

Hopefully, I am not waxing too poetic for all of you. We are in the thick of it now and, will manage. We're grateful for each other, for everyone's support and for my Mother-in-Law being here to help. It all is making such a difference!! Thank you, thank you, thank you!

Home at last.

Well we did it- after 25 consecutive days in the hospital, I am finally out, and tonight I will sleep in my own bed. It is nearly impossible to explain the enjoyment I have in just thinking about being at home and sleeping in my house with my things. As usual, I am beat, and even though we have been home for 4+ hours I have not been able to enjoy it very much. We will return to Mayo tomorrow at 8am for blood work and IV medications, but at the end of it, I get to come home again. Yeah for me! More to come.. please stay tuned.