Routine Check Up

Gracie met with her Austin oncologist Dr. L. yesterday as she needs to get scheduled for her routine hearing tests, kidney tests (GFR) and MRI. She needs the kidney and hearing tests to monitor how well they're functioning after chemo as the drugs she was on are known to impair them. The MRI is just something she is required to have every six months until she's six or seven because there is a very small risk for her developing trilateral retinoblastoma until then. Trilateral retinoblastoma is when tumors start growing in the pineal gland (in the brain). They don't spread there, rather it is just another site (like the retina) where the tumors can spontaneously grow. My theory is that trilateral rb is the reason why they say the survival rate of rb is 95-97% if contained to the eyes. Originally I was wondering why the survival wouldn't be 100% if it was contained to the eye, but then I remembered trilateral rb. In such a case you could remove both eyes at birth and still die of rb if it started to grow in the pineal gland as it's extremely difficult to treat. Thank heavens trilateral rb is extremely rare and we just check most kids to be ultra cautious.

The good thing about going to the Austin cancer clinic is that Gracie got to see her best friend Claudia, the child life specialist there. If you remember she is absolutely fantastic with Gracie. Of course we love Dr. L. too, but Claudia's whole job is to try to make the kids experience as good as possible. She's absolutely amazing at what she does. Remember she's the one who hooked our other kids up with Super Sibs and applied to Make A Wish for Gracie. Anyway, Claudia gave Gracie some more beads of courage to add to her collection. She has now started her third string! Claudia also mentioned that they'd like to throw Gracie an end of treatment party. This is something that they do for all children when they finish treatment, but I didn't think Gracie would get one here because she didn't actually do her treatment here. Although she did spend a lot of time at the clinic due to all of the transfusions she required (9 in total). So sometime in the next few weeks we'll go back to have her end of treatment party. A cake is made and donated by the wonderful "A Taste of Bountiful Bakery" and Gracie gets to choose exactly what she wants. So far she is requesting a strawberry Belle cake with pink icing. Interesting. Our family is really excited as all the kids are invited, we'll even pull them out of school if necessary. We're so grateful for the wonderful care we receive here.

Stephanie