Saturday, January 21, 2012

UPDATED: A Trip of Hope

As I type this, Julianne is somewhere over the Atlantic on her way to Hungary.  I'll let that sink in a little bit.  Yes, I said Budapest, Hungary.  She is on her way there to pick up some experimental treatment for Isabella that is not currently available in the United States.  As I mentioned a couple days ago, I don't think traditional medicine has much more to offer us and Julianne has been researching all sorts of other treatments that have shown promise in other parts of the world.  This particular treatment she is on the way to get has shown remarkable progress in treating cancers and although it has been used in a limited number of brain tumors, almost 50% of those treated have shown significant response. Two days ago, we decided that it was worth a shot and planned the entire trip then.

Obviously, there are a bunch of risks involved with this, but when you are placed in a desperate situation, you weigh your risks and outcomes.  For instance, we don't have the safety net of the FDA or a set of clinical trials to validate the claims of the medicine or the luxury of insurance covering the cost.  Heck, we don't even know if the medicine we receive will be nothing but tap water.  But that's where we are.

At least we still have a little bit of hope to cling to.

UPDATE (1/22, 6:30pm ET)
Julianne arrived safely in Budapest and has already met with the doctor to ask questions and stuff.  He will be delivering the medicine to Julianne tomorrow night and she will fly out the following morning.  Julianne should be home Tuesday afternoon.  Thanks to all who've checked in.  We know chances are still slim that this will do anything, but as they say, some hope is better than no hope.

Tuesday, January 17, 2012

A New Year's Update

Geez.  We're already more than half way through January and I realized that I hadn't posted in a while.  So, first off, Happy New Year.  Our family spent a quiet new year's at home without much hoopla.  The euphoria of the holidays has given way to the dreariness of a snow-less winter.

Weather aside, the last couple  of weeks have been pretty difficult.  Isabella has steadily declined.  She now finds it very difficult to stand up, much less walk.  We are now looking into a pediatric wheelchair since she has outgrown the old toddler strollers that we have been using.  She also cannot talk aside from some slight whimpering or mumbling.  Sometimes, with some great effort, she may say a word, but usually, it's just a cry of frustration as we try to guess what she's trying to say.  It breaks me up to think that I'll never hear her voice again.  She no longer has any control of her bladder and needs to wear a pull-up at all times.  Her left eye has started to droop, and with the weakness on the right side of her face, her right eye stays open wider than her left eye giving her an eerie and asymmetric stare.  Her left hand has gotten weaker as well as it now shakes when she holds a glass of water.  If you recall from one of my first posts, the first sign that we saw before Isabella was diagnosed was her hand trembled trying to drink a glass of water.  Along with increased weakness of her left leg, this probably indicates tumor spread to the other hemisphere of her brain.

 Up until the last couple of days, her mood has been decent, and she would still laugh and hum along with a song.  But that stopped just recently.  I'm not sure if that is because of the medicine and supplements that we are giving her of if she is just starting to feel more and more tired.  Her overall energy level is gone as she no longer has the strength or desire to leave  the couch.  Again, I can't stand the thought of never hearing her laugh again.  

We're still on a low dose of chemotherapy along with a bunch of naturopathic supplements.  But honestly, I don't think that traditional medicine has much more to offer.  It really is agonizing to watch Isabella have to go through all this.  It's also tough on the rest of the family as we try just to make it through each day.  I can't even put into words what Julianne is feeling, and it's certainly not fair to either Annalise or Nathaniel as they try to have a normal childhood.

 I wish I had better news to report, but I just wanted to get something out there.  I know a lot of people are still following and don't want to "bug" me for updates, but know that we do appreciate the support.  Thank you for reading.