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Monday, February 20, 2012 - 12:42pm

MRI this coming Thursday!  We'll post results when we have them.  It's been business as usual over here otherwise. 
 

Thursday, February 23, 2012 - 6:17pm

No apparent growth since last MRI!  We push on for another 3 months until the next one.

Thursday, May 31, 2012 - 10:03am

We had another MRI for Hailey yesterday and the results were not good.  There has been significant growth in her tumor.  We do not have the answers right now as to what we will do next, but we are gathering information from around the country again and trying to come up with the next treatment to start as soon as possible.  The list of remaining options at this point are not ideal for one reason or another.  Wish we had more comprehensive or better news to report, but the reality is we're in another scary place again and we're just not sure what's next yet.  We'll try to update again when things are clearer.  As of today Hailey is still doing "normal" activities and not showing increased signs of the growth yet.  The girls do not know yet, so if by some chance anyone reading this would see them in the next few days we'd ask that you not mention anything to them yet until we've had a chance to get our feet on the ground and the right opportunity to talk with them.  We just found out late last night.  

Thursday, July 12, 2012 - 9:20am

After a lot of discussion and opinions, we've settled on retrying the first treatment regimen Hailey was ever on and the one that gave us the most shrinkage of all the therapies we've tried.  Every option on the table right now, including this one, has its own set of scary downsides and risks.  But all in all it is probably the best at this time of a bunch of bad choices.  So on Tuesday Hailey started back up on Carbo/Vincristine/Temodar chemotherapy regimen that will go 18 months if she can make it that long without complications and the drugs are actually working of course.  We are at such a critical point right now.  Her tumor is bigger than it's ever been by quite a bit, it's continuing to grow, and we're definitely seeing the signs of it.  Our hope at this point is that we can get at least some shrinkage with this treatment with no additional damage to her, and at the end of the 18 months one of the newer therapies will have advanced (ideally one that could be taken orally with little side effects) and she could stay on something like that as almost a maintenence therapy for the forseeable future to keep the tumor from growing again.  What we seem to know about Hailey's tumor at this point is if it's not treated, it grows.  The senario we're hoping for now is about the best we can wish for at this point and would avoid for now having to dive into the risks and life altering event of taking her to MD Anderson for Proton radiation.  That option does remain on the table, however, and unfortunately we appear to be getting dangerously close to it.

 Needless to say, we're in a scary time right now, as usual I guess, but things feel closer to the edge than we've ever been.  Despite this, we are still plugging away as a family, trying to be as normal as possible and have as many good times and as much fun as we can, as well as move forward successfully in other areas of our lives.  One day at a time...