Friday -- and the news is no different

Hi! How are you doing? I am pretty tired. Both in the sense of exhaustion and the sense that I am tired of hearing the same broken record and no good news (for that matter there hasn't been a lot of bad news either).

Trish's Billrubin is a little higher today, some of the enzymes are a little lower. The liver stuff is not even the worse mountain we are climbing....Somehow we need to get Trish to eat more and more often. They say the liver involvement could be slowing her ability/desire to eat, but today she hit an all time low weight of 73 pounds. Can we sart to pray for an appetite?! Could one of the great cooks of our time please start to eat more. Poor Trish, she is tired of all of us trying to get her to eat. It is THE topic of every visit. Nothing else will matter if she loses any more weight.

On to the medical stuff, today is the last day of Trish's zyvox antibiotic. Zyvox is known for reducing white and neutrophil counts and increasing the liver function numbers. The great hope is that by Monday, after two days off her 14 day regimen of zyvox, we will see her liver function return to its descent and the whie and neutrophils return to their rise (they have fallen greatly, but sill remain in the normal range.

If we do not see a drop in liver function next week, Dr. Meade will start another therapy. He is holding off on ECP as THE next therapy (if you want an explanation of ECP look afor an earlier post where I explain it), why? Because ECP is kind of like the chicken and the pig's level of commitment to breakfast -- the pig is a little more committed and so is ECP. While it is a safe routine, it takes 3- 6 hours and she'd need the treatment 1-3 times a week for 6 months to 3 years or longer.

He may use another treatment first and hold back on ECP until it is absolutely necessary. We found out that ECP is available at Memorial West, just about 1 mile from our house. Dr. Meade actually emailed the University of Miami today on our behalf. It is a great thing having so many doctors truly caring about the whole person and not just the treatment or how little time the can spend with you. I have to tell you that we made the right choice in choosing a BMT center and would urge you to do the same.

We are off from IPOP this weekend. Back on Monday. Tomorrow I will take Matt to the airpoort after we atch the Gator game at Aunt Mary's (if I can get it on pay-per-view) and than it is Trish's Mom's turn to head to the airport on Sunday.

As for Trish, she is tired, frustrated and hating the fact that she must use a wheelchair, to go everywhere. I hope we can get her eating soon and that she can gain back some of her energy very soon.

Thank you for your continued support and prayers.