Saturday, December 17, 2011

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. :)


5 comments:

Amy said...

ang- i will keep you all in our prayers! praying that he gets to stay home for the holidays and everything goes well for him!

Heather said...

Lots of prayers your way. please please PLEASE let me know if I can do any thing to help you.

Staci said...

You, Ben and your family are in my prayers. I love you and him and the girls and Cody (if I have to, kidding). I want to come see you, let me know when works.

April said...

Oh Ang, I'm so sorry! I was so hopeful when I saw you at target that he was getting better and doing well. I pray he has a good Christmas and i'm here for you. Praying my heart out that he continues to be a strong little boy.

Lynnette and Paul said...

Darn....we are so sorry to hear this :( Good or bad...it's still good to get your updates! I'm glad to hear you guys will be able to enjoy Christmas though. Please know we will definitely be praying and hoping for better days for sweet Ben real soon! All our love!