Long Needed Update

Hey guys,

It's been pretty uneventful (which is good).  Tom's just caught every bug I could possibly bring home from the daycares that I visit, but other than that there hasn't been much to report.  They never did the 60 day biopsy because things seemed good.  They weren't seeing any Graft vs. Host Disease (GVHD)  so they were going to do another donor lymphocyte infusion (DLI) and at the last second Tom started showing some signs of GVHD with his liver function so they held off and that's where the fun has started.


His liver function tests have been all over the place, then he started with the typical hand and foot rash/itching, and mouth sores again.  They put him on prednisone and had him start a dexamethasone rinse for his mouth (both steroids) to try and get the GVHD in check.  With some recent check-ups the liver function did not seem to be bettering so they have scheduled a liver biopsy- which he is actually getting prepped for right now as I write this.  They also started him back on an immune suppressant to try and get the donor cells to calm down.

Today we went in to the doctor prior to this liver biopsy and the Tom mentioned the stomach problems he's been having and the doctor wasn't thrilled about that.  Well, that and the minor detail of Tom having lost like thirty pounds in a couple of weeks (Ladies- it's not a diet I'd recommend).  Doctor Carroll was not so stoked about this news of 8 pounds lost in four days and the stomach issues so he said it sounds like the GVHD has spread to the gut which is very concerning.  Due to the concern of the spread and also that his meds aren't being absorbed to combat the GVHD he is actually getting admitted to the hospital tomorrow so that he can get IV meds to get this all under control.

The Plan:

Dr. Carroll said that it shouldn't be a "long" stay, but that it could be a week or more to get his GVHD  under control, have an idea of what's going on with the liver, get his liver function back on track, etc. In the meantime... I sill have to go work (boo) so since he won't be on chemo and super miserable (just very bored) I thought it might be worthwhile if anyone is available during the week to hang out with him?  Tuesday night I actually have class so if someone is available in the evening that would be good too.  Tom also loves food from "the outside" haha he can't do spicy or acidic but would love to have some food dates (who doesn't).

The Good News:
We have been hoping for GVHD.  The liver biopsy is just to confirm and to also check for any infection or side-effects from all the meds.  The doc said it's highly unlikely and he doesn't expect to see leukemia cells (because we're certain this is all GVHD) but that they check for that too.  So just getting a hold on all of this will mean that the GVHD tends to keep people in remission so this may be the answer to our hopes and prayers.  Let's hope he can get balanced and under control to make this a short stay.

Did I mention today is our anniversary? This boy just has a determination to not enjoy our anniversary! (Maybe I should take the hint-haha).  Tomorrow is also his one-year anniversary from his second stem cell transplant!

Prayers for a smooth and speedy recovery appreciated.  :)