Looking back over the past 2 weeks, I first think about how busy we have been! Every morning, we receive a schedule for his day. Since we are taking part in this clinical trial they want to know everything there is about Nick before we begin radiation treatment so they can evaluate the effects of his treatment. Everyone he needs to see is all right here at St. Jude and they coordinate it all. I think we have just completed all of our consult visits to the dentist, ophthalmologist, physical therapist, occupational therapist, speech therapist, psychologist, neurologist, radiation oncologist, Neuro oncologist, school, a music lesson and more. Nicholas has had numerous MRIs, x-rays, a Lumbar Puncture (spinal tap), and surgery to place his portacath. He even got a few tattoos!

St. Jude ran all of their own pathology on Nick's tumor. They came the the same results as the mayo clinic. A Myc amplified, classic medulloblastoma, with anaplastic areas. This confirmed we made the right decision. Our course of treatment is 6 weeks of radiation, then a 6 week break back home, and 7 months of chemotherapy. Then we will have to remain in Tennessee for another 28 days following his last treatment. The chemotherapy treatment consists of 5 days each month spending inpatient for the first 4 months, then the last 3 months he will receive out patient chemotherapy. St. Jude also tested his spinal fluid to see if there was evidence of metastatic disease. This is cancer that spreads, and we are so thankful they did NOT find any metastatic disease!

As you can imagine, this has been an emotional time for Nick. He is nauseous a lot, and has a lot of anxiety about painful appointments. He has a poor appetite, and often sleepy. Having to go under anesthesia so often takes him 2 steps back every time he shows improvement. Now that his port was placed 3 days ago, we can finally move on from all the prep tests. Still no time to recoup, because radiation began the next day, Wednesday, 5/13. Today was Nick's 3rd treatment. He does this awake as long as he can lay completely still for about 15/20 minutes a day, that's all it takes. The biggest thing that bothers him about this appointment is that the radiation triggers his brain to believe he smells something terrible. He also had his first official day of school today!