Wednesday, April 18, 2012

An Empty Update

Still Nothing... These second opinions are taking their time coming in! Case is, obviously, our first priority, so it's hard to understand why he isn't everyone else's first priority. If we have learned anything with this cancer, it's that things in the medical world take FOREVER!

We will probably be meeting with Dr. Granger (neuroblastoma expert) in Ft. Worth at Cook Children's on Tuesday. Texas Children's Hospital in Houston was supposed to discuss his case today. We have spoken with some people at Memorial Sloan Kettering Hospital in NYC. There is supposedly a miracle worker up there, Dr. LaQuaglia (" Dr. L") who is a master surgeon with neuroblastomas. We are also waiting to hear from a contact at St. Jude's in Memphis to see if we fit into their "out of the ordinary" type of patient. So the balls are rolling, just slower than we'd like.

I'd like to think that it is because his case isn't a severe one. The scary side of my brain says that it's because everyone wants to confer with each other before anything is said to us because there's something crazy going on. Either way, we are learning patience in the meantime.

Meanwhile, I am pretending that we are normal. It's nice not going in for labs twice a week or anticipating the next round of chemo. Case is almost recovered from his Hand, Foot, and Mouth virus. It caused him to have a fever last Thursday and Friday, which require us to go into the clinic for an infusion of antibiotics. They do this just in case the bacteria is in his port. The poor guy has little red bumps all over his hands, wrists, toes, and ankles. But like always, he's a trooper! I am just so glad that this happened after his blood counts recovered from chemo. Otherwise, that would mean a 2-week in-patient stay for us.

The little guy really likes to feed himself these days

We think it's pretty cute. He looks like a little man.

Still cute...even after cleaning up messes like this everyday! Who wouldn't let him have his fun?

And his cute brother, just because.


  1. Aargg! I am so sorry that it is taking this long to get some definitive answers. Hopefully they will come soon.

    I can't believe that he got a fever AFTER all of the chemo was over. Go Figure, but thank heavens!

    Those pictures of Case eating are adorable. What is he eating in the top picture?? Are those blueberries? Those are Charlie's very favorite.

    Thank you for keeping us all posted on his progress.

  2. Em! You are the best. Case is lucky to have a mama like you. I'm always amazed at the advocate you are for your kids. Most people might not understand from reading that post that YOU were the one to make all those meetings, consultations and 2nd (3rd,4th...) opinions happen. It takes hard work, dedication and lots of time to do all of that. We pray everyday that the doctors will know the right thing to do for Case. I love him so much!

  3. Emily - you are an awesome mom. Both boys look adorable. I hope that answers come quick for you, sorry you have to wait and wait.

  4. Oh man! You are such an amazing person and I know the best thing will come to you guys. You will feel so good knowing that you did everything possible. You are the best and keep hanging in there! Love you all!

  5. So sorry you are having to wait so long. We will pray that these next few days will be filled with happy things so that the time will go faster for you. We love you guys and always pray for you.