Well, we have finally started Mollie's neuropsych evaluation. It is going to happen over 3 appointments and we did the first last week. It was was 3.5 hours of testing. First we met with the doctor and talked together about Mollie's general disposition, likes and dislikes, and aptitude for different subjects. Then came the wait. Mollie met with the testing specialist (XO) for 3 hours, while I sat in the waiting room filling out a questionnaire and surfing the net.
At the end of it all, XO brought Mollie out to me and commented, "She's bright. Very bright!" So, she has about another 1.5 hours of testing left. Her first grade teacher will fill out an assessment and Matt and I will send in our independent evaluations as well. Then we will meet and discuss the results of the evaluation.
The point of all this? Well, there are known late cognitive effects of chemotherapy (that happen months and even years after the end of treatment), particularly from the methotrexate she received in her cerebro-spinal fluid at least 15 times. So, the idea is to perform a baseline analysis to make sure all her learning needs are being met currently and to establish a baseline from which to judge any future changes. We need to know how Mollie learns so that we know what changes to look for and have an idea of how to help her should she need it.
I feel that this analysis will be very useful; monitoring the long term side effects of the chemotherapy is incredibly important for Mollie's long term health. While I know that the oncologists recognize that, I realize they are also primarily focused on helping these children survive (and rightly so). That puts a lot of responsibility on the parents to make sure that the children receive adequate long-term follow-up care. We are trying our best to stay on top of all of this, but it's hard because so little is known about the long term effects.
Coming soon... a post on fundraising! Matt will be running for a CURE in November and we can use all the help we can get!