Sunday, May 03, 2009

Still here.

It’s Ed again. Andre is asleep. He’s on his 7th night here in the UW hospital. Visitors are welcome to break the ennui of a confined life.

He was admitted to the hospital on Monday because of rashes/hives all over his body, conjunctivitis, and his lips that were cracked and bleeding so badly that he’s unable to eat or drink. The next day, the doctors did two more skin biopsies (for a total of 3 biopsies in 5 days). They also put him on 140 mg/day of prednisone which is twice the highest dose he’s ever been on. It did a lot of wonders for him as he was chipper by Tuesday afternoon, his lips had stopped bleeding and was able to start eating again, and the angry rashes were less irate. He even managed to be wonderful company to the two lovely ladies who visited him that night. When I left him on Wednesday night to go back to Vancouver to work and do my taxes, he was still fine but less chirpy. The steroid magic went away on Thursday. They did a 4th biopsy on Friday. This time, it was of his mouth. They also started feeding him nutrients through his central line (this process is called Total Parenteral Nutrition, or TPN for short) because he’s unable to eat enough to maintain his body weight. He sleeps most of the day. He’s unable to walk the halls of the hospital floor because of the inflamed skin around his groin area.

He’s been seen by oncologists, ophthalmologists, infectious disease specialists, a radiologist, and by a dermatologist. They’ve done biopsies, swabs, blood work, changed his medications (such as increasing the doses of the immunosuppressant prednisone and Tacrolimus, adding several eye meds, etc.), and a slew of other procedures. Today, they confirmed that he has chronic GVHD (graft-versus-host disease) based on the result of the mouth biopsy. He’s back down to 70 mg/day of prednisone. They’re considering adding back the other immunosuppressant--Myfortic--that he was weaned off two months ago. His rashes needs to calm down some more, and he should be able to eat on his own again before they can discharge him as an out-patient back to the care of the SCCA’s Long-Term Follow-Up Unit (LTFU). The LTFU will take the reins again because his regular SCCA oncologist does not want to deal with GVHD. This is a good thing because the LTFU is better equipped to handle them anyway.

I go back to Canada first thing tomorrow morning, but will drive back at the end of the work day. Thank God for public radio and for books-on-tape.


Roobeedoo said...

Thank you so much for the update, Ed! We were so worried by the long gap in posts. Still worried now, but at least we know Andre is getting the care he needs. Sending positivity across the waves!
And Ed - you take care of yourself too! Hugs to both!

Hammer said...

Been worried too. This isn't always a case where no news is good news.
Subscribe to TED.COM on iTunes.

All kinds of amazingly interesting talks. Kills hours.

Paul said...

Thanks for the update, Ed. Please keep us informed whenever you can.

Ron said...

Remember to take care of yourself too Ed. said...

Ed and Andre... yes, the gaps are scary for those of us out here sending positive energy, but certainly understandable when you are both in the middle of the battle. Just want you both to know we, your collective cheering crowd, are still out here and hope for better news soon.