Wed, 10 Sep 2003

"Boring"

I'll start tonights email with an apology of "Sorry it's taken so long to get current info out." It hasn't been horrific the past few days but busier than I realize. Jade had his check-up Mon at the BMT clinic and again today. I had every intention of emailing Mon night and when that didn't happen I vowed it'd be Tues morning and somehow that one got away from me and now we're at Weds evening. Anyway, here we go:

Jade is doing remarkably well given what he has gone through. The staff was actually suprised he didn't have to be hospitalized over the wknd or stay in the hospital when we went for our appt on Mon. (Didn't occur to me that he might be staying when we went on Mon for our appt!!)

They said the immune suppressant drugs he's on are as tough as chemo on his organs and body. His kidneys are tolerating it quite well. His magnesium levels are ok but only with a magnesium infusion every night - - probably for the entire month he's on the high does of cyclosporine (immune suppressant drug.)

The cyclosporine has given him some bizarre side effects. His skin is quite sensitive and gets hot flashes easily. When he pulls his socks up, it feels like someone has put an open flame to his skin. Jade has to dry his hands off by patting with a towel rather than rubbing to avoid feeling like his skin is on fire. Even with the hot flashes he can grab a glass of cold milk and his hands are cold and have gone from red to white-bluish instantly.

The swelling in his lymphnodes in his neck has gone down. He's feeling a little more normal and getting more energy the farther we get away from the radiation. There are still definite ups and down with energy during the day though.

Probably the toughest side effect has been constant, moderate to severe nausea. He is on multiple anti-nausea medications and takes them so they overlap one another. He needs to stay on lots of fluids and eat even though nothing sounds or tastes real great. Getting a handle on the nausea has been tough for him but the last day or two has been better. He will likely have this all month since it's mostly due to the drugs and not the radiation.

Given all the side effects he's dealt/dealing with, the BMT staff is telling us Jade's "boring" and doing better than they thought. I'm extremely grateful for "boring" (but bear in mind that's their description of the last five days, not mine). I know it can always get worse and you don't have to look far to see how it could be worse. We're very grateful for how well it's gone to this point. Jade is really hanging tough physically and mentally. Thanks for your faith and encouragement (and patience with the lack of emails!) We're very appreciative and gain so much strength from you. Take care and we'll hope for more "boring" updates!

Much love.................Tanya and co.