So Ben did not have his surgery today. He did the whole colonoscopy prep yesterday, which was sad for him, and then today he went down, checked in at 6:30 am, and the dr's said he was too sick to have the procedure. They did a chest x-ray and he has pneumonia. Thankfully, so far, it's not a bad case because he's being his same cute, smiley self. He's home now with another new med and is taking a nap with Cody. I have mixed feelings. I really wanted to get the biopsies and see what is going on inside his body, so we would know what treatments to start and we can get that going. But of course, if it's not safe to do anesthesia because his lungs are sick, I wouldn't want anything to happen to him either. It's also hard because I couldn't go to the hospital with him today, Cody had to take him by himself, which has NEVER happened. I am rarely ill myself, but have been quarantined with a yucky stomach flu for the last two days. I was sad not to be there with Ben, that was hard for me to not know what was going on, to not be able to talk to the dr's and give my input, and especially to hold and comfort Ben. Of course, he was totally fine with Cody. Cody's a wonderful dad! I've just never not been there. I think we will try again for the surgery sometime next week. They will call us to schedule. Darn it. Poor Benny. Thanks for the prayers for him. :)

Some bad news :(

I always have good intentions to post when something happy happens, I just don't really get to it. New Year's resolution I guess. For now, unfortunately, bad news...

So here it is, remember those pesky EBV blood results? I did a post like 6 months ago explaining it a bit. We've been following them a lot lately because this year has been so hard for Ben. He's been in and out of the hospital so much!, he's still getting the sores in his mouth, still has diarrhea, etc, etc.

I was trying to remember, and I think the highest his EBV levels have gotten to when we've tested them is around 13,000. Remember, that is the number of copies (or replications of the cell) per 1 ml of blood serum. I just had a phone call from Ben's oncologist today explaining his latest results were over 100,000! That's very high.

She said she would like him to be able to enjoy Christmas next week (of course we are watching him closely and if he needs to go in sooner he will), and then after that, on the 27th, he is going to have another endoscopy and colonoscopy with biopsies. The oncologist said she was sure they will find the PTLD. With EBV that high, who knows what they'll find. I think they may biopsy the sores in his mouth while he's in surgery, though, it seems likely they are the same PTLD as well.

When the results come back, we will decide what treatment plan to pursue, of course this means more chemo, the yucky kind, not just rituximab like he's had before. This is no fun for poor Benny. I am thankful he'll get to enjoy the holiday; he's getting big enough I know he'll love it! But I am worried and hate to put off the surgery. When he's sick like this, and the results look so badly, I need as much info as possible. I hate to wait to start treatments too, will it just get even worse before then?

Thank goodness he's extraordinarily tough! Please remember Benny in your fasts and prayers. :)