Still Hurting

Sorry for missed posts...it's been a bit crazy here at the household.  Have to give the older kids a round of applause for hanging in there and moving forward.  Lisa is still not feeling well and her cries and shouts of pain and anger make it pretty stressful, but the older kids have managed to brush it aside and not let it get to them.

Up until yesterday Lisa was still spiking fevers around the clock.  She hasn't slept thru the night in over a week and she's often complaining of pain in her legs, neck and stomach.  She has barely eaten since we got home Saturday and the food she has in her has been forced upon her to which she protested LOUDLY. 

Yesterday, I did sneak her up to the school so she could see her teachers.  I wanted to avoid running into her classmates because Lisa was not feeling very social and I feared any attention from her peers would put her over the edge.  Her teacher was not in the class when we got there, so we left a "mysterious calling card", we switched out Momma Monkey for baby Monkey McMaster.  We then went to see Lisa's speech teacher.  While both Lisa and her teacher were excited at being reunited, Lisa's energy waned quickly.  She lasted about 15 minutes before she put her head down on the desk and said she wanted to go home.  She was so tired she didn't even want to walk.  Her teacher was nice enough to go out to the car and get her baby stroller so we could wheel Lisa out.

After we got home, Lisa rested and took a nap and then we headed out to see her doctor at Motts.  Mike and I are very concerned about her reaction to the antibody, but her doctor is very confident that these side effects are normal for an antibody study and did not seem surprised they were lasting this long.  He feels that we should continue with the study.

I'm not sure how I feel about any of this.   I've having trouble figuring out how I can go back to St. Jude in just two more weeks and watch Lisa endure more pain.  I'm not sure how much time we are buying her with this treatment and I struggle with what the payoff is.  If we are only buying her a few more months with the antibody, is it worth it to put her thru the pain?  If  we are giving up 3 to 4 months to pain just to gain an extra 3 months in the end...isn't it a wash when it comes to quality of life?    If only we had a crystal ball, if only we knew this was working, if we knew how much time we were buying....it's just so hard not knowing and at this point, there isn't an answer.  I keep praying that Lisa will wake up and just bounce back to her normal self so I won't feel the tremendous guilt and fear of putting her thru this again.

Arghhhhh!