Genetics

Little Miss Rylie had an appointment with her Geneticist last Wednesday. First, let me just say Dr. Viskochil is a pretty amazing guy! He takes so much time with each patient and the thoughtfulness and consideration he gives to parents is just amazing. He really makes you feel so comfortable. 

We spent the first parent of the appointment reviewing Rylie's chart and getting re-familiar with everything that has happened in the last 6 months. Dr. Viskochil was so surprised at how quickly treatment was started. He said typically children do not present with these types of tumors until around age 3 and after that they typically take months if not years to grow into the point in which treatment is needed... Rylie's tumor was found at 20 months and progressed to the point of needing treatment in just 6 weeks... Puttin TV us in what Dr. Viskochil calls uncharted territory. Yeah, super comforting to hear! 

For Dr. Viskochil the next big step in Rylie's treatment plan is her next MRI in August. By August we should be able to see that the tumor has stopped growing which means Rylie is responding well to treatment. So, were holding out breathe and will pray for good news comes August 4th. 

Other than the obvious issues with the optic nerves Dr. Viskochil was pleased with Rylie's growth and development. She is small, but getting plenty of calorie and growing at her own steady pace. She has also presented with no new NF symptoms so that was a HUGE relief for everyone. 

So we continue on with chemotherapy and check in with Dr. Viskochil again in December. 

Ice cream after her blood draw- sweet treats make everything better!