Free to be

Day 73:  Annie had her Hickman removed yesterday.  It was a big psychological boost as it's hard to feel like you're getting better when you still have tubes sticking out of your body.  Additionally it will free her up for carefree showers and the possibility of swimming.  Thankfully it will free us up from the daily care the tubes required.

Her blood counts continue to be positive; platelets and whites in the normal range and hemoglobin holding at 9.0.  While this is still below the normal range of 11.5-15.5, 9.0 doesn't make her too lethargic or moody (she has been as low as 5.0 but she was very unpleasant to be around).  Her latest project to stay engaged inside our home has been the construction of a Lego village.  Here she is with today's creation - a cruise ship.  So while her body may have been stuck at home, her mind has wondered free and wild.  Next appointment in two weeks so we'll post then.

Back in the saddle

Day 59:  It has been a relatively calm few weeks.  Annie's platelet and white counts continue to be in the normal range.  Apparently her hemoglobin count could take up to a year to reach its full potential and even then it may not be as robust as the other two lines.  Currently it is at 9.0.  However after seven years of low platelets and all the restrictions that came with that (no bike riding...), Annie is thrilled to be cruising the neighborhood on her bike, at dusk (she has to stay out of the sun for a year).  Of course we discovered that her bike was too small, and she has to wear a mask, but no matter, it is pure joy for her.  She also seems to happily move through her days at home with a variety of visitors coming to play games, share hobbies and help her catch up on school work.  She gets tired of her bald look but luckily doesn't dwell. There are adjustments we make between doctor visits in response to any imbalances in her chemistry panels (sodium too low, potassium too high...) and while we seem to be out of the acute GVHD period there are still some things we're watching in terms of chronic GVHD.  She even had her first bloody nose in months but it stopped after a short while like most people's.  After bike riding, her next big goal is to get her Hickman out so she can swim, move more freely, and not require daily and weekly care plus special wrapping to take a shower.  While this means she'll need to go back to being poked for blood tests, she's so used to it that it's an easy trade off for her.  The doctor gave the OK to schedule this surgery and hopefully it will happen in the next couple weeks.  So I'll aim to update then, July 25th.  As usual we are grateful for all the prayers, support and good thoughts that have helped us all get to this point as well as we could hope.