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Apr 05-11

This Week

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Alyssa’s GVHD did not show much improvement when she was switched back to prednisone. Decision made to up dose to 30mg daily.  This was about a week ago. Her skin was still a mess, no energy, freezing all the time.  She also tested positive for 2 separate viruses, EBV and HSV. These are very common viruses that most people have and don’t even know it.  But once they are in your body, you will always have it, but they are almost always dormant...until they “wake up” and realize you have no immune system to fight them.  Then they go crazy.  EBV was treated with a Rituxin infusion (she’s had this before, back in May, same treatment). The HSV was another story...it produced these horrible open blisters all over her body that were extremely painful.  On Wednesday, the pain got so bad they needed to admit her to get her on a PCA (pain pump). They also started her on an IV form of an antiviral for the HSV.  I’ve never seen her so bad.  When she starts crying, I know she’s in serious pain.  Flash forward 48 hours to Friday...they got her pain under control, the medicine started working and there was lidocaine cream for the blisters that in Alyssa’s words was a “game changer”. On top of that her skin GVHD is clearing up beautifully. She literally went from one of her lowest point to the best she has felt in months, all in 2 days.  She had a picc line inserted on Friday, because we were going to have to finish the 14 day course of IV med at home.  No problem, we’ve done that before.  PCA removed on Saturday and here we are on Sunday just waiting for discharge papers.

As much as I’d like to say that she’s finally turned the corner, I can’t bring myself to think it.  She’s been here before (although nothing like where she was at on Wednesday. That was just plain scary). It’s like PTSD. I almost feel like I can’t enjoy these victories because something always seems to be lurking around the corner.  I hate being like this and hopefully this anxiety will ease over time.  Alyssa is feeling better today than she has in over 4 months.  I need to feed off her energy. She’s in a good place and I’ve got to re-learn how to be hopeful and optimistic again.  I know I’ll get there eventually. 

On a separate note...for those of you who still are not taking this social distancing thing seriously... it’s time.  There’s no excuse for being so selfish. While we were in the hospital, a story broke that 18 Children's hospital employees tested positive for Covid-19. Mind you there’s not one Covid-19 patient being treated here.  So these were all people that somehow picked up the virus and then came to work...in a hospital...with the most vulnerable people that absolutely cannot afford to be exposed to this virus.  Of course, they never meant to intentionally spread this, BUT when you make a reckless decision to disregard medical advice TO STAY HOME, it puts people at risk. So please, please, do the right thing.

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