Treatment Update

I know a bunch of you are wondering what came of the treatment that Julianne brought back from Hungary.  Well, for the past couple of weeks, we've been prepping to make sure that everything is in order before we gave the first dose.  We had to make sure that we had some glycerine to give to Isabella, which is something that helps open the blood-brain-barrier to help make the treatment more effective in getting to the tumor.  Second, we had to access Isabella's port ourselves at home (and by ourselves, I mean Julianne, of course).  Accessing the port means sticking a giant needle through Isabella's chest.  The treatment is administered through this port and goes directly to Isabella's heart and bloodstream and pumped to the rest of her body.

Finally, on Tuesday, we were ready to give Isabella her first dose.  The Hungarian doctor warned us that Isabella may experience a few symptoms, varying from a mild fever to some edema, which is swelling in her brain.  The swelling in her brain is caused by inflammation which can increase pressure to the rest of the brain and in extreme cases can cause death.  He said that if a patient is responding to the treatment, we should see symptoms from 2 to 8 hours later.  So we gave the first dose at around 4:30 on Tuesday.  At around 1:00am, Isabella woke up in the middle of the night with a fever.  She also had some weird shaking and trembling in her arms and legs.  At first, we were excited because this was a good sign that Isabella was responding to the treatment, but as time went on, her fever got worse and her trembling got worse.  We were only expecting a slight fever, but she had gotten up to 103, and we weren't expecting any neurologic symptoms at all, so the trembling was especially troubling.  Isabella also felt terrible and we all stayed awake for most of the rest of the night into the next morning when Isabella finally got to sleep.  We were so worried about the shaking that at one point, we were considering bring her into the hospital to treat her with steroids to try and reduce the swelling and pressure in her head.

But things calmed down and Isabella was able to rest most of the day on Wednesday.  We got in touch with the Hungarian doctor who mentioned that since she had such an extreme response, we would administer the rest of the doses at a reduced level so that her side effects wouldn't be so severe.  He also said to wait until all of her symptoms had subsided before we give the next dose, which will probably be today, since Isabella has started to feel better.

So that's where we are.  We still have several months of doses to give.  In a few months, we'll go in for an MRI and see if there is any change in tumor size.  Hopefully, we'll have a good idea before then if some of Isabella's neurologic deficiencies improve (such as her right sided weakness or speaking).

Also, for those of you in Norwalk, be sure to grab a copy of this Sunday's Norwalk Hour newspaper.  They will be running an article on Isabella's Make-A-Wish trip.  Don't worry if you're not from around here.  I'll post a link to their website once it's up.

Here is Isabella in her purple outfit, with her purple headband, sitting on her purple blanket, with her purple teddy bear that she named "Purplebella".