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!