St. Jude's

Well, we've arrived in Memphis and are currently staying at the Grizzly House. This is the place for people who just arrived through one week. After that week we would move to the Ronald McDonald house, but as everyone knows, Jennifer and Matt are going to let us use their house. This week has been a continuation of the whirlwind that Gill mentioned. In fact it has picked up pace. To be included in this study, they have to repeat a bunch of the studies that were already done. This is frustrating to go through again especially to Joseph who is fighting every step of the way. He has calmed down somewhat since our arrival.
Yesterday he had an IV placed and got some lab work done before an afternoon MRI of his brain and spine. We went back to our room but our oncologist called and said that they discussed his case at the tumor board (which is a meeting of oncologists, neurosurgeons, and some others involved in his case) and felt like there was an increase in the size of his ventricles in his brain which is a sign of increased intracranial pressure. You can look all this up if you want more details, but basically the tumor is in a place that can block the drainage of his spinal fluid from his brain. He then told us that we could not leave the campus for Christmas and that their opinion was that he needed a second surgery to relieve the pressure and try to resect more of the tumor. This obviously upset us greatly. We met with the neurosurgeon here who was patient with our many questions and concerns. He basically said that we could either have a second surgery where they would remove as much as they could, put in a shunt (which is a tube from the brain that drains the fluid), or start radiation and just watch him closely. His recommendation was for repeat surgery. He did however say that he was not as concerned about any short term effects developing and that we could go back to Nashville for Christmas.
I was really upset with the idea of more surgery especially since last time they stopped because they couldn't tell tumor from brain tissue. But remembering back, our surgeon in Atlanta said that there was a portion of the tumor that they could, if needed to relieve pressure, go back and take out but he left it because they weren't sure of the pathology at the time. And the surgeon here is pretty confident that they will be able to take out more of it this time but again, they won't be able to take it all out and they are not going to try to do that because it is too dangerous. So it looks like we'll be leaving tomorrow, and when we come back wednesday or thursday, we'll be going to the main Children's hospital here in Memphis for more surgery. This will push back the start date of his radiation 2-4 weeks for yet another recovery.
Yesterday was a rough day. One of the roughest we've had. But after talking with the surgeon and hearing that we will be able to go back for Christmas our moods have improved significantly. Despite not wanting to go see doctors, Joe is walking more and has times where he is sweet, smiling, and being very funny. His new favorite activity is to set up all the medicine bottles in a tower and then knocking it over with his new cars. He is back on the steroids, so he is moody and not sleeping well again, and he has an insatiable appetite for McNuggets and fries.
Please keep praying for him and for us, that we will have a good time over Christmas seeing everyone and Holly again, that we will be prepared for another surgery with another PICU stay and for the recovery, that Joe will adjust to having people poke and prod him, and that Gill and I will communicate well. Thanks everyone for all that you've done for us. We miss all our atlanta people badly, but we're looking forward to Christmas with all the family.