This is the poster sent from the troops in Iraq. Everyone asks who we know serving in Iraq and I'm not sure they believe us when we say, "No one." With each new team of doctors and nurses we get, when Johnny gets a package(s) or a huge stack of cards they usually say, "Wow. He's famous." as if to make him feel like he's special. Mike and I casually agree, "Yeah, he is. We're just his entourage." Then as they find out he has shoes, t-shirts, websites and stuff they say "He really is famous!" and Mike and I are like, "I know. I tried to tell you..."
Today has been a good morning. PT came by and he and Julie (his PT) worked on the edge of the bed and eventually standing on his own for about 10-15 minutes. He did great-- Julie will be back everyday to keep him active.
He's looking and acting better each hour -- as fast it things started going down hill, they are finally improving just as quickly. He has finished two of the four drugs in this block. Tomorrow will be chemo #3 -- it's just one dose but could have serious side effects for up to 24 hours. I think he only has 3 more days of chemo #4, which will put us close to Wednesday-ish and then he is done. As long as he's close to remission or within the range the doctor's are hoping for he will move straight to transplant after day 28. Depending on the transplant protocol there is usually a 5-10 day conditioning period before the actual transplant. Now I am jumping W A Y ahead... I'll just focus on getting through this week and talk about transplant details later -- like day 28.
My only concern with Johnny is his belly. He looks like he's 9 months pregnant. The search is on for his belly button -- I think it might even be on milk cartons by now. He's so stretched out that his belly button is a thin line -- Mike likes to say it's smiling at you. We have been casually dropping hints to the team that the last time this happened the Renal team came and fixed everything by adjusting his fluids along with adding one other drug. I completely understand and well aware of the fact that with each new drug added there are ALWAYS pros and cons and while a drug is good for one situation it might not help in others.
Since his belly button has gone MIA within the last hour I begged one of the ICU docs to consult the renal team, because the hints we were throwing them seemed to fall on deaf ears. I know he was in total renal failure a few months ago and what we are dealing with now is a completely different animal, but all the renal team had to do is take one look at him and knew exactly what to do. Within a day or so, he was very close to normal size. Just like if the renal team needed to consult the HemOnc team, they would probably take one look and know exactly what to do.
One of the reasons I begged for renal, is last time Johnny's chemistry showed he was low on sodium. So the instinctual thing to do is add more sodium and increase your salt intake. But when renal came to see him, they said that is the exact thing you shouldn't do. Johnny's not low on sodium, but he is especially low on potassium and slightly lower on a few others. All I'm saying is just consult renal to see if anything can be adjusted to help with the massive amounts of fluid in his midsection -- which makes it painful to move, hard to breathe and maybe we can stop the daily x-rays of his chest. Hopefully I won't have to get all medieval on someone today...