June 6th, Day 41, Responding to treatment

We've had a lot of great news today.  Hunter's hemoglobin decreased a little, but held steady enough that he didn't get a transfusion.  Way to go Hunter!!!  His "marker of destruction" also continued to trend downward.  His antibodies are still eating up cells, just at a lower rate.  He continued his treatment of high dose steroids and IVIG.  For sure, they thought he would need blood yesterday so we thought today was just a given that he would have a transfusion.  Big praise that he held his own and is responding beautifully to treatment.

His nausea from yesterday is much better, but he still doesn't have the raging appetite that usually goes with high dose steroids.  Mark stayed at the hospital last night and while they didn't sleep a lot, he got a few hours.  In the middle of the night he was hungry and drank some ensure.  When Jana and I arrived, he was feeling some pretty intense pain in his lower back.  The pelvic area where much of your marrow resides, so he's definitely feeling the effects of the IGIV to increase production.  He got a dose of morphine and was able to take a long peaceful nap.  When he woke up, his back felt better.  He says this is the best he's felt in four days.  His coloring looks a lot better too.  If we could get him some more sleep, maybe his dark eye circles would go away.

He has two more days of IVIG.  He is also getting his steroids through his IV.  After Saturday, he will start to transition from IV to oral steroids at some point.  From what we understand, he will be on steroids for a while and will have to taper slowly.  We haven't been given any sort of time frame.  We are so thankful for our doctors, and all their knowledge and expertise on how to balance and juggle this complicated process.  

 Yes, we are still getting daily prizes.  We know we're brats, but it sure makes us smile every day:)

Since the boys' school is out for the summer, Mom and Aunt E have been switching off keeping the boys on Tuesdays and Thursdays.  We've been telling Erin she's going to be a very confident first time mom after all the time she's spent with her nephews.  "The Newlyweds" (which reminds me I need to blog about her beautiful wedding) have been living in the attached apartment at our house for the last two months.  Erin and Michael have been so good to help out with the boys.  They moved out today and I know they will be missed!  

Today was Honey's day to have the boys.  She got to watch swim lessons, then picked up the twins from the GG's and met Michelle and her crew along with Aunt Katie at the zoo.  They rounded out their morning with Sharkys.  We're not sure she will go back to work she had so much fun.

Honey asked "Who wants ice cream?"

Picture Caleb repeating "I wuv ice cream" 

Clayton too.  

The zoo never gets old.  Mom said they were checking out a peacock.

  

  We keep telling Hunter each day that passes is another day closer to when we can go home and be with our kids.  This past week has been a reminder about why we are glad we are five minutes away from the best medical complex in the world.  We are encouraged about all the progress Hunter has made this week, but would love prayers that his antibodies will settle down, that his nausea will stay under control, and that he will continue to produce good red blood cells.  It's been a good day!