Thursday, July 23, 2015


Today marks three years from when Tom went to the doctor with his symptoms-- two more days will be his diagnosis date. Three years!!!! I'm not sure that time has "flown" but it sure has passed by and we are grateful to all of you for not growing bored of Tom's journey and continually rooting for him and supporting us in various ways to help us get through, thank you!

Tom is home from the hospital as of yesterday (thank you Jenny for picking him up and keeping an eye on him for the day).  The steroids they have him on for the GVHD are creating blood sugar spikes so that's been worrisome.  They sent him home with medication for that as well, but in the middle of the night he woke up feeling hyperglycemic (jittery, warm, head felt funny). The steroid also retains fat so poor Tom will be blowing up a little bit, which I guess will change the concern they had about him having lost about thirty pounds so quickly.

We still don't have a clear answer about the liver biopsy results from UCSF.  It was mentioned to Tom by a doctor (not his doctor) that it was confirmed CGVHD (chronic graft vs host disease), but the paper he handed Tom as if it were the correspondence of the results was actually just a paper from Sutter themselves with the preliminary results and that they were sending it out for further opinion. So hold tight, we will keep you informed.

Tom has enjoyed getting more than 20 minutes of sleep at night, probably helps to also be in your own bed and not the hospital bed which is too short for him (seriously). Today he goes in to the infusion center for an appointment and again Saturday so hopefully we'll get some answers about how to better handle the blood sugar and if they've actually heard from UCSF.

Stay Tuned.

Thursday, July 16, 2015

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.  :)