Monday News - A Couple of Extra Days

Before we get into Gracie news, I just wanted to let everyone know that Rylie's insurance company agreed to cover her transplant today! We are so excited for her and her family. I know that they are really ready to get things underway. Gracie will be so happy to have a partner to go through this process with, I'm sure. Thanks for all of the prayers!

Gracie met with Dr. Orchard this morning, and Dr. Whitley this afternoon. Since Gracie is fighting off a tiny cold and because she still has a little bit of a rash (although it's really improving), the collective decision was to delay Gracie's admission until Thursday or Friday. Once admitted she will start the chemotherapy process.

While everyone is excited to get started, today all of this became so real (to me). It gets more real each time I walk into the hospital. By the end of the week our little Gracie will be starting chemo!!! ACK!

We walked through her treatment regimen over the next 30 days or so. So much going on! Antibodies, immune suppressors, other chemo drugs. Then there were all of the meds to address the side effects of the treatments. Anti-siezure meds, blood pressure medications, allergy meds, steroids, anti-fungals, pain management medications, diuretics, to name a few . My head was spinning. Poor Sarah had a glaze in her eyes and a look on her face that was probably no unlike when Gracie was first diagnosed. She's a tough one though. She grew up with two very mean and manipulative older brothers and sisters. Besides, we are keeping our eyes focused on the big prize - a healthy baby with a long life ahead of her.

In a week or two, these postings will be full of numbers as well as commentary. There are a lot of indicators that collectively give us a picture of Gracie's progress. We're looking at white blood cell counts, hemoglobin, platelet counts, neutrophils and lymphocytes... Before we throw too many numbers at you, we'll have a description of what they are and why they are important.

After the treatment regimen, Sarah and Jimmy had to sit through a long discussion of all of the things that could go wrong with this procedure. It was painful for me to hear, so I know it was really hard for them. The doctors have to inform the families of all of these things. It 's scary, but its so important that we focus on the bigger picture, and what will benefit Gracie most over the long haul. To make things harder, Sarah and Jim had to start signing all of these consent papers to allow the university to use her data for research purposes.

I'm sure there is more to tell, but that's all I can think of right now. Plus, Sarah just called, and Wyatt's family is going to Sally's - a restaurant/bar in the area for dinner, and invited us to tag along.

Again, our spirits are high, and the over-arching feeling is one of nervous excitement. Everyone is focused now on staying healthy and making sure Gracie is in peak condition when she arrives at the hospital to be admitted. She is a fighter, and we just need to give her all of the time and tools we can to make sure she has a competitive advantage.

Keep us in your prayers!