Friday, October 8, 2010

St Jude...be here a little longer...possibly

It's been a bit of a trying week.  Lisa has been hit and miss with her moods, generally most of her meanness is directed at the doctor, poor woman.  Lisa is really trying and even told of the few of the workers they are her friends which is wonderful to see, however, by the time she sees the doctor she's usually tired and uncooperative.  Not sure why, but it could be the long wait for the doctor and the timing of the appt which is usually at the end of a pretty full day of tests.

I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is  asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel.   Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded  that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.

This means we get the weekend off from appts, but we will still be here at St Jude.  Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days.  While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better.  She is so excited to see her cousins Mitchell and Alyssa.  We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.

If MRI does not show anything concerning and we proceed with the next round of  antibody we will be tacking on some extra days to our visit here.  Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.
 
On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets.  The winner of the auction was Ryan Tobin with a final bid of $310.  The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!!  GO BLUE!

2 comments:

Anonymous said...

Linda,

Tell Miss Thing I miss her and have been keeping her in my thoughts and prayers every day. Have her call me during the week,when she has a wait for tests or appointments, that way she won't be so bored. Hang in there and GO BLUE!

Uncle Matt

Anonymous said...

I'm glad to hear that Lisa is able to express her feelings. It is good that she can share her frustration with the doc as well as her friendship feelings. I would anticipate (hope?) that the doc understands this as well.

Have a fun visit with cousins and the zoo animals!

Sending warmth, hugs, positive energy,

Love,
Pam