Amazing Week!

What a week we have had! I cannot thank everyone enough for all the support in helping Mac have his wish to meet Tony Stark/Iron Man/Robert Downey, Jr come true. We are so blessed to have met him incredible selfless people who had never even met Mac extend themselves to make it happen. We learned on Wednesday afternoon that we had been given the go ahead by Dr. Wolff (oncologist) and Dr. Heilman (neurosurgeon) to fly to LA on Thursday morning. We had the privilege of going to a reshoot of a scene from Iron Man 3 and meet Robert Downey, Jr. I was not sure what he would be like in person as compared to the talented man seen on screen. He was just as amazing in person. He was funny, empathetic and just a genuinely kind man. We are forever indebted to him for bringing such joy to Mac. While we were in LA we also spent some time at Universal Studios and went to the Santa Monica Pier. We all got a chance to put our feet in the Pacific Ocean for the first time. It was an amazing weekend that we will remember with fond memories for the rest our lives.

We finally got home at 10pm tonight. I am just waiting to throw some clothes in the dryer then off to bed. We will be heading into Boston tomorrow for surgery. We have to be there for 6 am then surgery is scheduled to begin at 7:30. He will also have his ear tubes replaced before the neurosurgeon begins. Surgery should last about 5 hours then he will be sent up to the PICU for recovery. We are hoping to just spend 1 night in there and then be moved to a room elsewhere. If all goes as planned (which we know rarely happens) he should be discharged on Saturday. Then we will wait a couple of weeks for the tumor maker testing results to come back. Once Dr Wolff has that information he will put together his new protocol.

This week will be a long one. My body is not going to know what time or day it is going from east coast time to west coast time then back to east coast time and tomorrow we will be on hospital time. I will try to keep this blog updated as much as possible but as long as he is in the PICU I will not have internet access.

Thank you all for the many prayers!!