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.

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