Day Five

Here is my son resting after his SUCCESSFUL surgery today. There are many more things to say about the surgery, and I'll get to that, but the main thing is that the doctors feel good about the outcome and believe that they have removed most of James' tumor, meaning that we get to move on to the next step of James' fight. It's going to be a long journey, but we're starting our right. For those who are keeping score (I am) right now we're looking at:

Tumor: 0
Jamesie: 1

For the first day in a long time, I felt better. This successful surgery means we can move forward with treatment and hopefully put an end to this tumor permanently, allowing James to live the healthy and normal life that he so richly deserves. Thank all of you for praying for us today, the outpouring of love and kindness that we have received and the number of people who have expressed their love for James is overwhelming.

The night before the surgery was rough. Kara and I both had trouble sleeping, as the added anticipation of the surgery complicated our already described difficult sleeping situation. In addition to that, even though we were on the floor, a few items of pre-op prep like a hairwash and an IV at 4 AM meant that Jamesie didn't sleep, so we didn't sleep. As I mentioned before we were thrilled that James finally regained his appetite and developed a love for solid foods. While fantastic, this meant that because James could not eat last night, he was starving on top of being exhausted, as he's rarely able to get much sleep without getting interrupted. He awoke at 12:00 SCREAMING and could not be consoled, he finally just wore himself out yelling and went back to bed. He did the same thing at 2:45. Kara was particularly upset because seeing her only aggravated him- he wanted to eat, and he was furious she wouldn't feed him. Fortunately as the operating time neared, James appeared to exhaust himself and calmed down.

Before the surgery, we were fortunate that one of the ministers with pastoral care at the hospital (who knows one of the pastors at our church who also came this morning) visited us and shared a scripture reading and prayer with her. Perhaps jut as important for our mental health, she also sang to James with us for about thirty minutes while we waited on the transport team to come and escort us to pre-op. Our family was able to see James on the floor before he left, and Kara and I followed down with him to the pre-op area. He was much calmer down there, and fell asleep before they woke him up to give him medicine to put him asleep, for some reason I thought that was funny. After the night, we were worried that he would be rolled away from us screaming. Fortunately, that wasn't the case. Although it was heart wrenching to watch him leave, knowing that he was calm was important. We shared a hug along with a good cry in the hallway and left to find our families.

I'd like to thank the pastoral care department again for providing us with the use of a family room adjacent to the chapel for our family to wait in. The OR waiting room only allows 4 family members to wait. We roll large, so that wasn't really an option. Throughout this entire process, they and the staff at the church have provided steady support and comfort.

Far and away the most difficult part of today was waiting on news. The OR called once to let us know that the surgery was underway, and then were supposed to call every hour to let us know how the surgery was progressing. After the initial "getting started" phone call which arrived 45 minutes later than expected, we didn't hear anything for over two hours. We were becoming concerned. We did all kinds of things to keep ourselves occupied and distracted. Kara's friends read her the latest People magazine and played with her hair. I took a long, repetitive walk through the garden around the hospital and read an article in Texas Monthly about a gamecock breeder. Nothing really helped.

Finally, without warning, our neurosurgeon appeared in the doorway to the family room. Needless to say we were terrified. We had been told the surgery would be six hours, and less than three hours in, here's our surgeon. We both braced ourselves and ordered everyone out of the room, where I think they almost collapsed in the hallway.

Fortunately, the surgeon was bringing good news. The surgery had gone quicker than expected. James' tumor was primarily composed of a soft tissue with the consistency of toilet paper, and it sucked right out. The doctor thought that he had removed most of it, and confirmed that its behavior was consistent with the two types of tumor we had been told it might be. Obviously, we're still waiting (probably 3-5 days) on pathology to confirm what type of tumor we're dealing with. Because of how soft it was, the tumor had come out quickly. Apparently, tumors that are fast and aggressive like James' are composed of a lot of necrotic (dead) tissue as they grow so fast they outstrip the available blood supply. The positive is that in James' case this quickened the surgery, because the dead tissue is soft. Most importantly of course, the surgeon told us James was well and would be returning to us.

Sure enough, an hour or so later we returned with James to our old home in the PICU. This time in a MUCH larger room with a view of something other than the wall of Parkland hospital (I-35 traffic is an improvement). James is quite groggy as this surgery involved more medication than either of his previous procedures, but appears to be recovering well. We have a post-op MRI scheduled tomorrow to check everything out, though our surgeon doesn't think anything will show up. We are thankful, blessed, and finally glad that something good happened after the steady drumbeat of escalating bad news last week.

I want to thank all of you for thinking about James and praying for him today. Today was the most important day of his life, and I believe your support eased his course. Kara and I are continually amazed when we hear how far and wide the network of support that you all have created for him is. Words cannot express our gratitude.