Research

Brylee had an interesting day today.  It was such a mixture of emotions.  She's been really grouchy and yelling a lot but at the same time it's the most I've seen her smile today!  She actually wanted to go outside so we went on a walk.  She was so excited because she saw her first plane today!  It's amazing what glasses can do for someone!  She was so happy to be outside.  I've been trying to get her to got out almost every day but she keeps saying no.  I was so excited when she said yes today.  Thank you for everyone involved in the yard sale yesterday!  We are so humbled at the out poor of support.

We're meeting with her wish granters from make a wish on Tuesday night.  I'm really excited!  I'm thinking we'll do Disney World.  Unless they can get something different out of her hahaha.  How do you get a 2 year old that has stopped talking tell you what her deepest wish is?  I was thinking Disney World because she is in love with Cinderella and the other princesses.

We've been looking into a clinic study for her.  I've researched a lot of them at St. Jude's and other places.  Everyone is doing exactly what we're doing a Primary Children's.  The only one that is different and stands out to me was one a Johns Hopkins in New York.  This study does a surgery to put a canula into the tumor.  This way they can administer medications and chemo straight into the tumor and completely by pass the blood brain barrier.  This is the first time they've ever used a canula on a DIPG tumor.  I know they use them on other brain tumors but a DIPG is in such a fragile place in the brain that they've avoided surgeries.  I'm pretty positive that this is the same tumor Brylee has.  Her doctor has always called it an infiltrating brain stem glioma but every time I put that into google to read up on it all the information of a DIPG comes up.  DIPG stands for diffused intrinsic pontine glioma (the I also sometimes stands for infiltrating).  Her tumor and a DIPG have the same symptoms and survival statistics.  I'm going to confirm on Wednesday when we see her doctor again.  So don't quote me on it!  I feel kinda stupid that I don't even know 100% on what her tumor is called.  I guess I was pretty hysterical and didn't retain the information.  Who could blame me right?

Anyway this is just an update on Brylee.  I personally had a rough two days.  I've been doing a lot of research this weekend trying to come up with a way to save my daughters life.  Every time I read another article I start crying.  Every article says the same thing "There have not been any advances toward a cure in 30 years." or "Prognosis for a DIPG is not good and new diagnosis only survive 9-11 months."  It almost seems hopeless.  But I'm willing to try anything.  I've even been looking into changing her diet.  But who knows if any of it will work at all.  I feel like I'm grasping at thin air.