Biopsy & Engraftment Update

Today was definitely a less emotional day than yesterday! 

First of all, our "situation" from yesterday was addressed regarding the APN.  She was not in the group this morning during Steve's turn at rounds.  My concerns were targeted above the APN level, and I was told by the physician I spoke with that the attending would most definitely be apprised.  I left it with them.  It's difficult to step up like that, even with my personality.  It had to be done.  

Steve's WBCs are up to 0.3 today.  Late this afternoon we got preliminary results of the bone marrow biopsy.  First, some great news...NO leukemic cells were present, which is our ultimate goal, right?  Then later today Dr. Altman told Steve that Mary's stem cells were found in the sample.  Engraftment has not yet begun, everyone in the consult group feels that the (smaller) number of cells infused plus the Hereditary Spherocytosis are just making the graft take longer.  We just need to have more patience.  No talk or movement being made to harvest more cells, just hanging tight.  We have been thinking....Steve didn't talk until he was 3 1/2, didn't get tall until after high school graduation...why hurry now??

His mucositis is much better in his throat today!  He hasn't had solid food in over a week.  Had a hankerin' for watermelon (gads!) and lucky me, I found a cup of cut up melon in the 2nd floor cafe.  He chewed and swallowed 90% of it and kept it down.  When I left at 5:30, he had yet to hit the PCA pump for pain meds all day.  That is awesome.   His feet are a bit painful from the gout flare.  They are managing it with Colchicine, which he responds to very well.  Other than that, he is completely wiped out, dozing a lot, and not too alert.

Dr. Tim paid us a surprise celebrity visit, I got a big ol' bear hug from him, and we had a swell visit.  He is writing up Steve's case study to be published for other health care providers to use in the future.  Tim said that Steve's leukemia is a rare form to begin with, and, coupled with the HS, presents a "double-headed monster."  All the meat and potatoes are in the pathology, he said, and hopefully Steve's case will help someone else some day.

Since I haven't mentioned this in the blog before, his current diagnosis is ALL; however the ALL did not begin as ALL, nor did it start as CML and progress to ALL.  The genesis of his leukemia may never be known.  He is not "Philadelphia positive" either, as first thought in early May.

I did sanitize last night's blog epistle a bit, hopefully you can read most of it without wincing as much and won't be so embarrassed for my Mom.

Sue