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Thursday, July 29, 2010 - 9:12am

We met with our oncologist yesterday and after gathering feedback from other physicians around the country and weighing all the information, we are sticking with the current treatment for another 3 months and re-evaluating after the next MRI.  There were several factors in this decision, but one of the big ones is there just is not a clear cut next option.  Everything else out there has higher risks, toxicity, or unknowns, or a combination of all of them.  There have been cases where the chemo she is currently on (Vinblastine) has shown growth early and then shrinking.  We can't say we're totally comfortable with this decision, but we are doing the best we can right now with the many unknowns involved in this situation.  We will be watching her closely the next few months for signs that the tumor is getting bigger and causing complications.  If we see anything like that, we will probably have to take more risks and move to something else sooner.  We're in very scary territory now.

Thursday, July 22, 2010 - 9:29am

The results of Hailey's MRI indicated the tumor has grown again.  We're confirming numbers, but it looks initially like another 20% growth since January.  I guess the good news is the ventrical appeared to be down to normal size, but the tumor itself has grown and at this point we think it might be as big as or bigger than it's ever been since we were first diagnosed. 

We are gathering feedback from different sources around the country again and making a decision by next Wednesday as to whether we give this current chemo (Vinblastine) another 3 months, or switch to something else.  It will come down to all the same options we narrowed it down to a few months ago before we started on this treatment, all of which have downsides and unknowns.  There is a chance the treatment we're currently on could still work.  There have been cases on this drug where there was initial growth, and then shrinking after a long enough period of time.  We are gathering information from the head of the study on this drug to determine if the growth we saw is in line with what has been seen before in other eventually successful cases.   

In the end, we are back to gathering feedback from multiple sources, adding it all up and weighing it against our situation, and making another crapshoot of a decision!  

Tuesday, July 20, 2010 - 9:42am

Another MRI tomorrow.  Will post results when we have them...

Tuesday, June 15, 2010 - 7:09am

I know we haven't updated in a while, but things are fine on this end.  Hailey has adjusted to her feeding tube and she fully recovered from her venticle surgery.  We're just using the tube for medicines and supplements...she still eats her regular stuff as always.  She's doing well all things considered.  We continue to do chemo treatments every Thursday.  Next MRI will be in July and will hopefully give us some indication that the chemo is doing it's job.  We will also be able to confirm that the ventricle procedure worked as well. 

Faith finished kindergarten a couple weeks ago!  She did great.  We got lucky in getting an incredible teacher for Faith's first official year in school.  It made her experience that much better and was a big reason why Faith loved it so much.

So we're off to our summer routine.  Let the fun begin...

P.S.  We went to Bay Beach last weekend and Faith and Hailey both went on "The Scrambler" and LOVED it.  We couldn't pull them off it...especially Hailey. I see rollercoasters in our future (real ones...not the one we have been riding on for the last 3 years!)  And by the way, June 6th was the 3rd anniversary of Hailey's diagnosis.  It's been 3 years already!  Feels like 30.

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