Fuzzy Wuzzy

Hello everyone, it's been a few weeks since I've checked in, and it's comforting to know that some of you are watching for an update.  Steve's health has been pretty uneventful, which is both good and frustrating.  We are glad he is not regressing, but wish his labs would shift from neutral to drive.  Check out the hair!!  ------->>>>

Exceptionally great news is that his bone marrow biopsy results showed NO evidence of leukemic cells.  With the exception of his very first, diagnostic biopsy, all have been clear.  The biospy is like "looking into the factory."  Dr. Altman said his cellular activity is "splotchy," yet doing well.  Results also showed that 98% of the new cells being created are from Mary's stem cells; target is 95% or more, so more very good news.

His weight is back down to 160; lost 2 pounds each of the past two weeks.  Appetite is...meh.  He is sleeping well and trying to fight the urge to nap either at all or as much.  Preferred nap location is now a comfy chair and ottoman in the family room, that way he doesn't get in too deep of a sleep pattern and just drifts in and out.  He isn't sweating anymore when he eats, that was very strange but not unusual in someone who hadn't been eating solid food week after week.   

Dr. Altman lowered two key things:  One, the hemoglobin number we use to determine transfusions.  It is now 6.8.  He is going about once a week for blood.  It used to be that a unit of reds would perk him up and he would feel the difference.  Now, not so much, and often the day after blood isn't a very good day.  The second thing lowered was his anti-rejection drug, Tacrolimus.  This will eventually be eliminated.  The drug helps keep GVHD symptoms at bay.  He no longer has the mild skin rash but instead has some mouth/gum discomfort behind his upper front teeth.  Pain meds knock that out pretty well.  Potassium and magnesium absorb through food for the new cells, and so pills and/or IV fluids help the new cells get up to speed.  The potassium pills are huge and have been totally eliminated, a giant hooray.  Magnesium is improving, and we have been supplementing the pills with 500ml magnesium IV riders, they are shooter-sized and go up over 2 hours, which is manageable.    The iron chelator, Exjade, arrives from the specialty pharmacy on the 30th.  

So here's the scoop:  Steve's case is complex due to the Hereditary Spherocytosis.  We have always had options since transplant, and the one often taken is the wait and see decision.  Some of the questions that arise may or may not have answers.  His platelet count has gone WAY up, at one point this week they were at 110.  Again, remember 5 not too long ago?  That is great.  Hemoglobin has run from 5.6 to 8.1 (AFTER 2 bags of reds)....and his white count is bouncing up and down, "normal"...but was at 1.3 today, so he's borderline neutropenic again with his absolute neutrophils teetering around 500-700.  Frustrating.  Dr. Altman pointed out that one factor we *may* be dealing with regarding his hemoglobin is that Mary's DNA is creating spherocytes, as she also has the marker.  So Steve's spleen is recognizing HER/his new red cells as "wrong" and may be sequestering them.  I wasn't blogging back during tissue typing.  When using a sibling donor, they look at 6 major antigen proteins and hope to match all 6 for a perfect match, one that will produce the best transplant results and fewest graft-versus-host complications.  Of the five adult children, four have the HS marker.  Mary was the only perfect match, and she has HS.

Dr. Altman *thinks* Steve will never feel 100% better until the organ is removed.   I plan to press forward with a surgical consultation and have Dr. Altman arrange that in fairly short order.  Steve was NOT open to that several weeks ago.  We need to get him better to avoid being taken down by a cold, flu or other common malady that would weather much better in a healthier person.  He got his flu shot and we hope anyone that visits does the same.  

We have this week off from clinic, and will host Thanksgiving here next Saturday.  I'm pooped and not feeling very humorous tonight, thanks for checking in on us!