Sunday, November 21, 2010

The options

Sorry to keep everyone waiting for news after our doctor appt this week.  I was at the hospital both Thursday and Friday for quite a while visiting/helping two different friends whose children were in for care.  It was kind of nice being able to focus on someone else's problems for a bit.

On Wednesday, the doctor listed out seven options for us.  None of them are a "cure".  They are all "trial" drugs/therapies.  They are still in test phase to determine how they impact neuroblastoma they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all. 

The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks.  Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study.  We've heard good things about it and we want to try everything and anything to beat this miserable disease.

The next option--ALK inhibitor---is most likely the one we will try next.  Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found.  The waiting for a spot to open is nerve wracking  because of the waiting, we don't want to give the cancer a chance to take over.

Lisa so far, looks great and seems to recover more and more each day from the antibody effects.  I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing.  We are in good hands at U of M and we are very happy with our care.  We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past.  And of course, we continue to pray!


Anonymous said...

Hi Linda. Have been thinking about all of you. Will keep up the prayers. On a lighter note, Lily had a wonderful time with Maranda. :)


Anonymous said...

Hi Linda and Mike,

Not a day goes by that I do not send my best mojo to you and your family.

Love and light,


Anonymous said...

Linda and all,

HUGE prayers for all of you, especially Lisa. I think of you often. Please, please if Lisa ever wants to play with Camryn, she is free :-) May God send you in the right directions.

Tracy O'Brien