Friday, January 27, 2012

Join Justin’s Fight

Back in 2010, we visited Camp Sunshine which is a place where families with sick children go to get away for a week.  They have “theme” weeks, so we went during brain tumor week and met many other families that are going through everything that we are going through.  During the week we met a couple other families that had a similar tumor that Isabella has and sorta bonded with them since we all had very similar stories to tell.  My favorite memories from that week were sitting around an impromptu camp fire with them, roasting marshmallows, and making (what else?) s’mores.  My not-so-favorite moment was singing karaoke with them in front of all the other parents, but that speaks more to my lack-of-talent, rather than the fun (which it was)!


Unfortunately, since that time, one of the boys in our group has already died.  Another boy, Justin, recently relapsed and is undergoing further treatments.  It breaks my heart to see another family going through what we have been going through recently, but at the same time, seeing their strength is uplifting and inspirational.  On some days, I barely have enough energy to make it through the day, but somehow, this family is holding events and fundraisers to raise awareness and build a community and support structure around Justin.

Since Julianne is part of a bunch of support forums online and we get news alerts from anything brain tumor related, we are constantly hearing of other children fighting for their lives or losing their battle.  But it’s different when you actually know the people being affected.  Sure, we only met for a week, but it was enough to establish an emotional connection and reinforce to us that we’re not alone or the only ones fighting.

If you have a few moments, I urge you to visit their Facebook page (Join Justin’s Fight) and maybe drop a word of encouragement, as many of you have done with Isabella.

You can also read up about them with some recent news articles.

Vineland boy battles brain cancer for second time

Wednesday, January 25, 2012

An Exciting, Electrifying Weekend Coming Up

One of the reasons that Julianne rushed to go to Hungary and come right back is that we have a very special weekend coming up.  For a while now, we’ve been working with the Connecticut Chapter of the Make-A-Wish foundation to plan something for Isabella.  For those not aware, the Make-A-Wish foundation grants all sorts of wishes to children suffering from life-threatening diseases.

Due to her communication problems, it’s been difficult trying to determine what kind of wish we could grant.  We wanted to grant her something that we normally wouldn’t be able to provide her.  So while some kids take a trip somewhere, that’s something that we’d be able to provide.  We wanted to use the Make-A-Wish foundation to give her something truly special that would be beyond our means.  One of her wishes was to meet Taylor Swift, but her people said that she wouldn’t be available for several months.  One day, while Isabella was sitting and watching TV, we came up with the idea to meet the characters of one of her favorite shows, The Electric Company.

Now for those our age, you probably remember watching The Electric Company, and if you don’t have kids, you may not realize that they recently remade the show with a fresh cast and theme.  All of our kids love watching the show, so it was a natural fit for everyone.

So for this weekend, the Make-A-Wish crew planned out a super special weekend for us.  First, a stretch limo will be picking up our family at our house and driving us into New York City where we will have lunch with three of Isabella’s favorite cast members.  We’ll be eating at Max Brenner restaurant, a restaurant that specializes in chocolate (how perfect is that?).  They also provided some spending money for the kids to spend at Dylan’s Candy Shop, or anywhere else that we’d like the driver to take us!  While in the city, we may do a horse carriage ride through Central Park or some other touristy thing.  Anyone have any suggestions?

We’re all pretty excited, especially Isabella.  Here’s a picture of her with a custom Electric Company cake that the volunteers brought over to our house.


Also, here’s the intro song to The Electric Company and you can see they’ve totally modernized it!