Wednesday, September 22, 2010

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!

5 comments:

Karen said...

I wish I had seen you yesterday at school...to encourage you!
I believe that you are an amazing family and incredibly strong. God must have given all of you an extra dose of strength.
I am so sorry to hear that Lisa is still in so much pain and will pray that it will be gone. May peace and wisdom flow down from Heaven to you and Mike, as well as the miracle needed for lovable Lisa

Anonymous said...

Faith isn't believing that god can, It's believing that god will.

I am praying that the lord will give you direction on what step to take next for Lisa. I ask he guide you to what is best for Lisa. I admire you as a mother I can't imagine having to make these choices.

Kristen McIntyre

Connie said...

Linda please let me know if you need anything during the day and can't get out I am here. I will help in any way even with the older kids. We will keep praying that GOD gives you the wisdom to make all these decisions. Take care. The Plave's!

Anonymous said...

I know this is a very emotional and draining time. But, I know you will make the right decision that is best for Lisa. God is there leading you, just trust in him and his abundant wisdom. God bless you all.

Dbbeebe4 said...

What difficult decisions you have to make. I pray God will give you strength and guidance and hope. I know you will make the right choice, whatever it is. We're with you and praying for all of you. Debbie