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".

Tucci Lumber Bat Co.

You may be asking yourself what baseball bats have to do with Isabella.  Well let me explain.  As some of you may know, I began playing fast pitch baseball again a few years ago after a nearly 20 year absence from the game.  It’s a wood bat league, so every now and then, I have to get a new bat because the wood bats break.  Last year, I heard that one of the guys in our league, Pete Tucci, started his own bat company here in Norwalk so I thought I’d throw some support over to a local business.

Recently, I went over to the store and placed my order for my custom bat, complete with my choice of size, weight, knob, barrel size, color, and engraving!  Imagine my surprise when I went to pick up my bat and he not only had my bat ready, but he also made custom bats for Annalise, Isabella, and Nathaniel.  Now, they have their own bats just like Daddy!

The last few weeks have been pretty rough, with Isabella’s decline and Sebastian’s death among other things.  I know Pete probably doesn’t think that making a couple of bats would have such an impact, but it’s these little random acts of kindness that can really help perk someone up.  Never underestimate the power of every little act of kindness, whether it’s a simple smile, or a thank you, or making a bunch of bats! 

So, if you are in the market for a bat, be sure to check out Pete’s website (www.tlbats.com) or check out his store here in Norwalk.  He not only creates bats for baseball and softball, but also promotional and souvenir bats.

And even if you’re not looking for a bat, stop by his Facebook page and let him know his actions have not gone unnoticed.  Remember, don’t underestimate the power of simple kindness!

Tucci Lumber Bat Co. Facebook Page