Tuesday, August 5, 2008
Pablo is sleeping next to me as I write this. He just woke up, rubbed his eyes, got up on his knees to crawl over to me. He is huddled up on the right side of my body, his arms wrapped around my right arm, his toes under my right leg. His eyes are either closed or staring at the screen as I type. We have mastered this position. He can sleep, or chillax, while with Jo Ann or I type. Prior to May 17, this position was not in our playbook. Typing and sleeping were in different departments before that day. Now, Jo Ann and I type whenever we have a spare moment, whenever we can keep our eyes open.
It's Chemo Day. We are due at the Oncology Clinic at 8 a.m. to begin triage and labs. We've been at this just long enough that I can't recite what week this is in the chronology of the 24-week chemotherapy arc. If I had to guess, I'd say we are in the middle. At some level, it doesn't matter. The only sheep I want to count are the two tumors in his belly. And, soon, we will be counting backward, subtracting one, then the other, from the equation. After the tumors are removed, we will know more about the rest of our lives. The rest of Pablo's life. One thing we do know is that no matter what the surgeries turn up, the 24-week chemo regimen does not change. Even with the tumors removed from his body, the protocol still stands.
We mentioned late last week that the surgery strategy had changed. We have not yet found the time to write an elaborate post about this, so I will give you the basics now.
First, we have enlisted a urologist to work with Dr. Stein on the surgeries. Everyone on our medical team agreed that we needed a urologist to deal with the vision of the procedure, and to do the physical reconstruction of the kidneys. When this came up, we wanted the best, most experienced person to be scrubbed in, working with our beloved Dr. Jim Stein, who has looked after Pablo on his two prior surgeries as if he were his own son.
As we were researching 'best urologist,' Helen McCusker ran into an old friend of hers and Jo Ann's–a woman whose father is a veteran CHLA doc. When Helen told her about Pablo and our need for a urologist, she relayed the info to her father, and he called the man we ended up hiring, Dr. Brian Hardy. He is the head of urology at CHLA. He is a New Zealander, and has worked at CHLA for decades. He kind of reminds me and Jo Ann of various guys we know from the music biz. He's authoritative, direct, and wears a wild cap. Sort of like an old school record producer from down under with magic hands. The aspect of reconstructing the collecting system of Pablo's kidneys was the biggest issue on our minds for weeks. Everyone told us this procedure was very difficult, Byzantine, and be problematic. With a wave of his hand, Hardy dismissed this notion, noting that he's been doing it for decades. Sitting in the room with him last Monday, listening to his take on Pablo's cancer, his tumors, his treatment, we believe this doctor. Together with Dr. Mascarenhas, our oncologist, and Dr. Stein, our pediatric surgeon, we feel that we have the type of thinkers we need to get Pablo through this.
OK, so that's the long-winded intro to Dr. Hardy and how and why we brought him in.
The rest of this is very basic: instead of one surgery to remove both tumors on Monday 18 August, we are going to stage the surgeries. The right tumor (the giant one) will be removed on 18 August, and a full pathology study will be done on it, to provide as much detail on what the docs might find on the left side (the smaller one) when they operate the following Monday, 25 August.
One other fact Dr. Hardy introduced is that a child needs only 50% of a kidney to live a normal, healthy life. And that's 50% in total. So it could be 10% of the right, and 40% of the left. Not only that, but a partial kidney can grow larger over time. So, after a couple months of becoming junior medical students, some of the information we've been learning, and toying with, is starting to take root. Now that we have a place to put that data, it's all coming together in a practical way.
at 7:01:00 AM