Friday, May 30, 2014

More than a normally crazy week...

First, apologies - I'm not who you're here to read.  In addition, while I think that at my best I'm a passable writer, I will make no such claims today.  But, since it's been an interesting week and Beth is unexpectedly computerless, I thought it would be worthwhile to make an effort at an update.

An update on Beth (and her computerless status)- after a good visit with her doctor yesterday (more on that later), Beth wasn't feeling physically as good as she was mentally.  She'd felt more tired than normal all day and been running a consistently low-grade fever.  This isn't too atypical after the rituximab, so we weren't too concerned and Beth went to take a nap when we got home.  Flash forward a couple of hours - as I'm getting the kids ready for bed, Beth checks her temp again and it's jumped to 101.  With her white and ANC counts where they are, that's not a great sign, and as we expected the hemonc on-call wanted her to come into the ER.  We told the girls that Mom was going to the hospital after they fell asleep and then they went to pack.  We thought it was important that they not be surprised if Beth wasn't there in the morning, but needless to say, it didn't smooth the bedtime process out much.

They wanted to keep Beth overnight for observation and started her on IV antibiotics while doing blood cultures to see what was up (those take 48 hours, but the antibiotics start immediately - if nothing cultures and it turns out to be viral, they can discontinue, but with her immune system they don't take any chances).  Today Beth was doing pretty well, but her fever started to pick up again toward the end of the day (about 20 minutes before they were planning to discharge her) and they are going to hold her another night.  If they keep her longer we'll need to drop off her kindle charger and the computer, but we'd much prefer that she get better and come home.

Net, Beth is in the hospital, doing as well as can be expected but is anxious to get home, which hopefully will be late tomorrow.  This will make logistics complex, as we also have a family volunteer commitment in the morning (me and the kids), a piano try-out and recital, a softball game, and a party to go to; Margaret is at another birthday party tonight.  Hopefully Beth's discharge is conveniently scheduled, but based on prior experience I have no such expectations!

On the longer term front, we confirmed the plan for the next phase.  We have another round of blood tests on Monday; presuming those are stable or improving vs. last week, that would indicate that the rituximab may have done some good in clearing out her marrow and that it is working to repopulate Beth's bloodstream.  If that's the case, then we'll give it another week to keep doing that before we go back to the hospital for cladribine (7 days inpatient plus however long it takes to get rid of neutropenic fevers and infections - we're anticipating 3 weeks, optimistically).  If blood work isn't doing so hot, we might accelerate to as early as Wednesday, so that Beth can be there for the end of school festivities on Tuesday.  We'll do it here in Cincinnati (vs. NIH) so that Beth can be closer to family.  While treatment at NIH would allow the results of her treatment to be used as a data point in identifying treatment options, the actual treatment plan would be identical, and from a patient standpoint neither of us thinks it makes sense to have Beth potentially away from her support system here for that long (particularly since the follow-up rituximab treatments might also need to be there).  So - there's a plan!

Having Beth in the hospital, even temporarily, definitely makes the next phase feel less abstract.  I'm sure we're going to manage everything, there will be a lot of adjustments to Beth being gone that I probably haven't internalized/recalled yet.  (She's the planner, for example.  I just go where I'm told!)  I'll close it here, but thanks for reading and for all the love and support that people have shown - knowing how many people are in our corner makes a big difference.    

2 comments:

  1. Thanks for the update, and good luck to you all this week. You remain in my thoughts and prayers. Irene Y

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  2. Thanks for the updates from you both. I just read through all of 2014. I saw something on facebook which brought me back to your blog. I'm so sad to see you going through all of this again. But being so far away I so appreciate you including all the details. It helps me to feel close and connected to you and your family. We wish you the best and know you have lots of support close by. We're thinking about you on the west coast too.
    Love,
    Carrie and Jeff

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