This is a difficult post to write. Difficult because the news we got Wednesday has my heart hovering somewhere between my knees and my ankles. Difficult because Jo Ann and I are having so many feelings about this news we can't get clear about either its implications to Pablo (are there any, or is it the abstract possibility that has leveled us?) or the precise toll it is taking on us emotionally and psychologically.
What is the news?
The treatment protocol that Pablo's on has caused serious complications and deaths in an alarming number of children who are enrolled in a national clinical study. Pablo is not part of this study, but his treatment is following the exact same protocol and he is subject to the same risks. The head of the national study has closed the trial and has decided to alter the chemo doses in an effort to reduce the toxicity and the number of complications and deaths from the treatment.
Here are the facts we learned: six of the 53 kids in this study have experienced life-threatening complications (gastrointestinal problems and bowel obstructions), and three kids have died as a result of the chemo, not the disease — two were directly linked to Red Devil Doxorubicin's rugged treatment of their hearts. One of the stated risks of Red Devil is heart failure (not just during treatment, but at any point in his life). We have been assured it's a slim risk for Pablo's healthy ticker. Fair enough. But on an emotional level, this new news throws all statistical probabilities out the window. We all know Pablo has had intermittent and often unexplainable gut aches and pains for a long time, which is in line with the kids in the study group. I don't know what signs—if any—would precede heart failure, and kind of can't even go there.
I've heard other parents talk about checking their young kids at night, to be sure they are breathing. I had grown out of this as Pablo got older. Last night as P was sleeping, I found myself staring at his abdomen to be sure it was moving. My mind was racing, contemplating what I'd do if it weren't. That's one of those pinch tests the intellect loves to engage in at a time like this.
This is a lot of information, for sure. This does not mean that Pablo will experience any of these challenges, or that he could lose his life to the very treatment that's aiming to cure him. I am not a doctor or a researcher, and it is not my place to assign an absolute connection between what has gone on with Pablo and the reduction of the protocol's chemo regimen. What I am qualified to do (as is Jo Ann) is to be deeply concerned about this turn of events.
The fact is, this cancer s**t is scary on a good day, when you think everything's in its right place, and all will be over soon and we can get back to our normal lives. When information like this lurks up on us—info that says the treatment itself could harm or kill our little boy—I kind of go into free-fall. We've gotten used to being OK with the un-OK-ness of P having cancer, of P's treatment extending five or six months, of P not being able to start kindergarten, of P being home bound. There is a simplicity in the chaos. When you find that simplicity, you cling to it. Any sudden change of course is jarring.
This news is more than a change of course for Jo Ann and I. It's the addition of mystery to our lives. And mystery is a real mutha fo' ya. It's a turbo-charged shot of not knowing, and not knowing equals pain. When it comes to our boys, we don't like not knowing. When it comes to our little boy, Pablo, we thrive on things going according to plan.
There's nothing more to say today. I'm ready for this day to be over, so I can tuck Pablo into bed and fall asleep with him tonight.