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Monday, August 13, 2012 - 3:10pm

Looks like we've finally gotten back to normal or very close after Hailey's shunt surgery.  Just in the last day or two she's been able to be up and around for most if not all of the day with very little to no complication.  Seems like we're almost fully recovered over here.  Now it's back to trying to shrink the tumor.  We were able to do chemo last Thursday.  We have a couple weeks off now and then will start up a week long chemo by pill at home, and then a couple more weeks off and then the cylce starts all over again.  Crossing our fingers that something positive is happening in there.  She has handled the chemo itself very well so far.  Not sure how the one she will be taking at home will affect her.  She has lost quite a bit of hair unfortunately over the last few weeks however.  We admittedly were not prepared for that as it didn't happen the first time around on this treatment, at least not like this.  Its all part of the process I guess, but hard to see.  In the meantime we're trying to finish our summer strong and then see what the school year brings.  Next MRI is in the middle of September.  Thanks for all the well wishes as usual. 

Tuesday, July 31, 2012 - 10:00am

It's been a crazy week and we are behind on posting updates.  Long story short, Hailey has started chemo again and we were there last Wednesday for her 3rd treatment and she began complaining of headaches (which has never happened before).  They got very severe and after a quick emergency MRI and a lot of screaming and overall drama, it was determined that she had hydrocephalus (blocked ventrical and fluid building up around the brain) and needed surgery to have a shunt put in.  We stayed overnight in PICU and surgery happened Thursday.  We came home late Friday and Hailey has been at home recovering.  It's going much slower than we would like and we're dealing with some side complications yet.  Hopefully she turns the corner towards a full recovery from the surgery soon.  Then we get back to the original critical goal of shrinking this tumor.  She did have to skip chemo last week obviously with everything else going on.  We hope to be able to do chemo later this week and get back on track with the regimen.  Seems impossible to think of her going through that right now, but we're taking it an hour at a time over here.   

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...

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.