Snow Days

Jenny here.  And finally back at the hospital after being iced in 3 days!

As much as Wil has hoped it in to being, there is no way he is coming home today. Or this week. He failed his PT test this morning and is now wearing a fancy yellow bracelet (fall risk). He wasn't able to get out of the room with a walker. He has to sit to shower and needed my help to even complete it.  I set off his bed alarm when I sat on it (it alerts staff he tried to get up if weight shifts too much)...it's like the no snuggle alarm!

All but one liver level has improved, but the one that hasn't has gotten worse today. His sodium is too low as well. He shakes all the time from the steroids and is very anxious. All three combined equal a weak, sleepy, worried, and disoriented guy.  Last night he was scared something happened to me because he hadn't heard from me all day. But we had spoke just 2 hours before and several other times that day. He is still determined. He apologizes for "being a pain." That has to be the craziest thing he's ever said to me.  There is no place I'd rather be. 

Current plan:  He has 8 more days of steroids. They are weaning him off anti nausea meds. He's eating salted soup,  drinking Gatorade. Today a team from UTSW Zale rehab floor will come to assess and he may transfer over there to regain some mobility before going home. No chemo can happen until his liver heals. But they are still saying it will. So hopefully a week more to regain mobility and then maybe home.

As for the chemo regime, it's been decided his liver can't tolerate the pediatric protocol that would be the best treatment for the ALL. When chemo starts back up he will be on the adult protocol. It may work well too.  It's still intense and we can expect a 5-21 day inpatient stay when it starts up (5 if they count his current stay as time served ;)  Prayers that this new regime will work just as well!  Typically the adult protocol has lower effectiveness but we are still looking at and believing for curable intent.

A few people have asked how I am. I'm OK. Every day is different. Every day has some wonderful and some tears. But isn't that life for everyone?  I'm reminded this week about why I adore cold and winter.  Hot cocoa and  soothing soup and warm bread. They don't hold the same comfort when it's 110 degrees outside. It's not so much that I love freezing. I love coming in from the cold.  We love  and thrive and grow through extremes. They make us feel alive. Each day of this "life blizzard" I lose my way. But I also somehow manage to regain focus and come in from the cold...to enjoy both sides for what they are:  journey companions.

But it's because we aren't alone that it's possible. Thanks for hanging in there with us. <3