Tuesday, May 8, 2012


Isabella seems to be tolerating the feeding tube a little better in the last 24 hours.  She is not as raspy and labored as she breathes.  Of course, Julianne and I still listen closely and carefully through the night as Isabella sleeps to hear any oddness or disruptions.  It makes for some long nights, but there really is no other choice at this point.  Isabella has also tried solid foods, although very little, which is the first time since last week that she's tried solids.  She had some problems swallowing, but that is expected since she basically didn't have to swallow anything since she got the feeding tube.

Here is a picture of Isabella sitting out on our deck yesterday, enjoying the warm weather.  She had just received the beautiful flowers from her special friend.

Finally, here is a music video that a special kid made undergoing cancer treatment in Seattle. It's a little difficult for me to watch since it gives me flashbacks of walking around the pediatric floor at NYU, but maybe it will fill you with some inspiration and additional awareness.

Thanks for reading.

Sunday, May 6, 2012

Feeding Tube Updates

So the feeding tube has been both good and bad.  It’s been good since we’ve been able to give Isabella some hydration and nutrition, especially since she hasn’t been able to eat or drink anything.  We’ve also been able to give her supplements through the NG-tube so she doesn’t have to swallow dozens of pills throughout the day.  The bad thing is that the tube has appeared to irritate her esophagus and or/airway, causing phlegm and inflammation which is making it difficult for her to breathe.  The doctor says that the irritation should go away within a few days, but it has been a few days and Isabella is still raspy.  We’ll give it another day or two, but we may opt to pull the NG-tube and put in the abdominal feeding tube.

So right now, our main concerns are her breathing and swallowing problems.  Our doctor says that brain tumor patients usually die of one of two breathing related issues.  If anything gets into Isabella’s lungs (whether it be food or drink or anything), she could get pneumonia and develop an infection.  Also this could be treated with antibiotics, her body may still be too weak to completely fight off the infection. Second, the tumor grows so much that it affects her breathing and basically tells her lungs to stop breathing.

Not surprisingly, Isabella hasn’t had much else to smile about either.  She spends most of the day either sleeping or sitting on the couch watching TV or listening to music.  If the weather permits, we may take her outside for a quick walk.  The other day, we did take her to a craft store to make an imprint of her hand in clay.  She seemed to enjoy that, so we can’t wait to get that back.  Here’s a picture of her getting her hand imprinted.