Friday, October 15, 2010

THIS is the St Jude everyone raves about

All of Lisa's scans and test have come back showing her disease has not gotten worse which is great news.  It also means we can continue with antibody round 2.  Given all the pain Lisa was having, the doctor actually seemed a bit surprised that Lisa's disease remains stable;  the last patient to go thru this dosage of antibody had progression of disease so he was dropped from study.

Lisa continues to have pain specifically in her hands an feet.  Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there.  It is with much apprehension that we enter round two of this antibody.  Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less.  They also could not guarantee that it would not cause long-term nerve damage.  Based on prior patients, the doctor "thinks" that the symptoms should be less this time.  Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.

Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.

So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning.  Finally, I have found the St Judes everyone raves about.  We are in their new building and on the floor where bone marrow transplant is done. It is NICE.  All the patient rooms are single rooms with their own bathrooms.  They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room.  The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower.  It's heaven!  I know, easy to please!  I really hope Motts new hospital includes these type of accomodations.  You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!

Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and  continue forward.


Anonymous said...

Sending all my best stuff to Lisa!!!!! Sorry I haven't commented in a while, but I have been reading. Take care.

Lynn Zott

Anonymous said...

I'm glad to hear you found the St. Jude that all rave about.