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Friday, August 29, 2014 - 9:52am

I know we haven't posted in a long time.  Mostly, to be honest, because it feels exhausting to sit down and type about what's going on after all this time.  All in all things haven't been too bad.  All the usual things are happening with Hailey (some good and some bad), but unfortunately her MRIs have not been great over the last several months, ending with yesterday's results.  The quick summary is she has been on Affinitor since February taken by pill from home each day (which has been nice) with regular trips to Madison for port flushing and bloodwork (we kept her port in for now just in case).  She no longer has a feeding tube.  The MRIs show that the tumor has been slowly growing over the last year and is now 20% bigger than a year ago. So we are back to analyzing and making the difficult decision whether to stay with the treatment she's on and give it more time, or switch to something else again.  Not sure what we are going to do yet.  Gathering lots of feedback.  Been here before.  It's always scary because while she is doing well from a symptoms standpoint at this time, we never know when the tumor will start pushing on something that can cause major problems.  That's where we're at.  Back to square one again in many ways.  We'll see what comes next... 

 

 

Tuesday, February 4, 2014 - 8:43am

Just a quick update to say that Hailey has started her new treatment (RAD001).  It is a pill she takes from home each day.  It's not a chemo, so it's not been making her sick.  We will be doing regular blood draws to watch for other negative side effects, but so far so good.  Now lets hope it works in keeping the tumor at it's current size or smaller!

Thursday, December 19, 2013 - 5:23pm

We got great news this afternoon!  Hailey had her MRI yesterday and the results showed the tumor is stable from last scan, and smaller overall over the last year or so.  AND the cyst we've been watching has gotten smaller!!!!! That means the surgery we had scheduled for early January will be cancelled at this time.  We are so happy!  Can't even begin to tell you how little we wanted to put her through that.  Couldn't ask for a better Christmas present!!!

 

Happy holidays to you all.  The Meltz family will be extra thankful this season.

Thursday, October 17, 2013 - 12:40pm

Hailey had her 8th birthday on Tuesday!  She's doing very well and had a great day.  

We have decided to go ahead and schedule the surgery to drain the cyst in early January, unless symptoms arise to force us to do it sooner.  If after her next MRI in December her cyst has decreased in size by some miracle, we will delay the surgery.  We are really struggling with having to do this to her, but it's sounding like we might not have a choice.  Still crossing our fingers for a reason to hold off.  

We are also making decisions on the next course of treatment for her. At this point she is done with the current treatment.  It has worked in keeping the tumor at bay, but she has been on chemo so long, and on this chemo two different times, we all feel it is the right time to stop it for now.  So we are leaning towards putting her on RAD001 (a drug the PLGA Foundation sponsored research has had a large hand in).  It is a newer regimen but has shown early success and to be well tolerated and it is an oral medication (so the amount of times she has to go to madison decreases AND the number of times she has to get poked decreases).  If this could work for another year in keeping the tumor the same size or less, we would then likely try to take up to a year off at that time and do MRI's every 2 months to watch the tumor closely.  Bottom line, she needs a break, we need a break, but we're all worried about stopping right now because history tells us when Hailey's tumor is not treated, it grows.   So as of now, that is looking like our likely course.  Hoping like crazy we get no growth, she tolerates the drug well, and in about a year from now we can take a long break.  All too far ahead to think in the brain tumor world though I guess.