Update June 7

Luke made it home this evening.  He handled the cyclophosphamide (4 doses at 12 hour intervals) but after the last dose he got one dose of erwinia and with that came the nausea.

Luke gets the same chemo regime next week.  The cyclophosphamide will cause a big time drop in his blood counts.  Even though his counts have dropped some already, they are not expected to bottom out until after the next round, so some time next week Luke will he in the market for a transfusion and he'll need to watch out for a fever and the onset of an infection.

The AVN in Luke's ankles is giving him problems.  Both ankles are swollen and the right is painful to the touch.  For now there is not much that can be done with the ankles other than to try to manage the pain and hope his ankle does not collapse.  He was fitted with an inflatable boot to provide protection and additional support and crutches or a walker are optional.

Luke met with Dr. Worth from transplant after check in on Wednesday.  After presenting Luke to the department oversite committee, the recommendation was for Luke to continue with chemo and not undergo a transplant.  The chemo route was recommended for several reason; to the length of time Luke was in remission before relapsing and Luke's favorable response to chemo to date - they were able to get him into remission in 30 days and his Minimum Residual Disease (MRD) is negative.  Also considered by the committee was the risk associated with transplant.  Dr. Worth did not pull any punches, even with a sibling HLA match a transplant will carry some amount of Graft Versus Host Disease (GVHD) and there is not way to predict the severity.  Bottom line is dealing with the leukemia, the asshat, there is no magic bullet, no overnight cure, it's going to be a long haul.       

Luke was on the newly remodeled pediatric floor (just opened Monday).  The new room wow factor is LED lighting in the ceiling of each patient room.  You can select from the full spectrum of the colors of the rainbow to light the room. 

The new room was the good news, the not so good news was MDA has started a two year project of remodeling the lobby of the inpatient tower.  With the tower lobby shut down there is no direct route to the "F" elevator bank and the inpatient floors - visitors beware you will need to leave the security of the carpet to get to the F elevator bank!

Patrick from the MDA blood bank stopped by to say hello.  The crew from our May blood drive has the picture we took of them with Luke in a prominent place and they all want to know when we were going to do the next drive.

Will stay in touch.