Thursday, July 15, 2010

Our Medical Celebrity!

A flower girl at Uncle Cam and Aunt Jenna's wedding in Cardston Alberta. She's growing up way too fast! What a gorgeous little girl!

At IHOP having the traditional post anesthesia pancakes!!

Gracie on her way out of Texas Children's following her most recent EUA on June 18th.

Dr. M Gracie's oncologist in Houston and Katie the nurse practitioner who has been with us through this whole journey. They both take really good care of us.

Beth is the retinoblastoma coordinator at Texas Children's. I've only met her in person a couple of times, but she's my number one contact any time I need to call Houston or get anything arranged. She's a great patient advocate!

Okay, Gracie's not quite a medical celebrity but she is taking part in ground breaking research. June 18 Gracie went for her latest EUA. All was well and in fact she doesn't have to go back until her 5th birthday in October. A couple of days before the EUA we got a phone call from Dr. M Gracie's oncologist in Houston. He sounded really excited as he told me that Baylor University was doing a cutting edge study that they wanted Gracie to be a part of. It wasn't until later that night when we got a call from Dr. P (Gracie's geneticist) when we figured out exactly how cutting edge this was. They want to know more about the genetics of cancer. With rb children (who have the heritable form) we just happen to have a group of young kids who are highly prone to cancer. They want to do an in depth study of their DNA to try and find out all that we can about them. Hopefully this will lead us closer to finding a cure for this horrible disease. So they are going to study Gracie's DNA with a fine tooth comb and map her entire genome. To put it in perspective of how in depth they're looking only about 20 people in the world have ever had their DNA examined this closely. I thought that was pretty cool. Hopefully my baby girl will help cure cancer! Let's take care of this thing before we have to deal with it again, with Gracie, her children, or any one else that we love!

(James is telling me my terminology is all wrong. Sorry, I'm not a geneticist, or even a scientist for that matter. If you happen to be a Harvard biochemist or MIT chemist and are reading this you can email me with any corrections : )

Anyway all Gracie had to do for the study is give them some blood. It was supposed to have happened while she was under anesthesia for her EUA but somehow got missed. We went upstairs to the cancer clinic and they did it there for us. Beth took care of the little slip up. When I talked to her about it before we found out what went wrong I said "It's okay" her reply was "Not with me". It's great to have such wonderful practitioners working with us. It seems that they problem was an anesthesiologist who simply didn't want to bother with it before he started the IV. He knew it was supposed to be done, the OR nurse gave it to him, and he just didn't do it. So Gracie got a second poke because he was just too lazy. Or so it seems. I'll give him the benefit of the doubt and assume that he had a good reason. It didn't kill Gracie to get a second poke. She didn't love it either, but she got over it quickly. She always does. Of course we went to IHOP after the EUA. It just wouldn't be a proper EUA if she didn't break her fast at IHOP. The day after the EUA we headed off to Canada so we could go to her Uncle Cam's wedding. It took us three days to drive up. We stayed for 6 and then it took 3 days to drive back. It was wonderful to be able to play with cousins and visit with grandparents and aunt's and uncles.