No One Knows

The problem is that no one knows for sure.

I suppose I should clarify a little, so I’ll try. Way back on July 27, Adi restarted chemo after a 6-week break. He got two doses of vincristine/doxurubicin (poison and more poison), and started his every other day erwinia asparginase (yet another posion). Within a week, we had been admitted with a possible bowel obstruction, and a few days after that, we were in the ICU with sepsis and heading for surgery. Adi came out of that surgery and just a few days later we headed back to the surgical ward.

The surgeons and the oncologists conferred, and it was decided that Adi would recover from surgery, finish his course of chemo (about 2 weeks), and then during his next 6-week interim maintenance phase, he would have surgery to reconnect his intestines (reanastomosis). And then he would finish his last round of chemo.

But then a week -- seven days -- after the first surgery (which was actually the third abdominal surgery, but let’s not split hairs), Adi spiked a fever and was in terrible pain. YET ANOTHER OBSTRUCTION.

The surgeons and the oncologists conferred, and it was decided that right then, they would open Adi, reverse the stoma, and when he recovered, we’d move forward with chemo and all would be well.

Except that the head of the surgical department came out in the middle of the surgery to tell us that what they wanted to do would not be possible because Adi had suffered YET ANOTHER PERFORATION, his abdomen was again FULL of fecal matter, and his bowel was in terrible shape. They could not possibly reconnect at this point. In fact, his existing stoma needed to be resected, and they would make a new stoma.

Several hours later, Adi was in the ICU, intubated and sedated, and we examined his new stoma, which was busily expelling everything that had been trapped in the bowel.

The new stoma is inverted. I cannot explain to you in words how frustrating it is. We cannot attach a bag properly, so Adi is essentially constantly covered in leaking poop. Let’s remember that Adi is almost 11, and eats basically normal food, so we are not talking about sweet baby poop. We are cleaning him and changing dressings ALL DAY. We are going through copious amounts of supplies. Adi’s skin has severe burns from, you know, poop. And the oncologists are CHOMPING AT THE BIT to give him chemo.

The problem is that no one knows for sure how Adi will respond to chemo. Will there be another bowel obstruction? Another perforation? Will we wind up in surgery again, after chemo has brought down his counts?

Or what if we wait? What if we give Adi the month or two that he needs to heal, then close his stoma, and then finish chemo? Would that work? No one can say for sure. So we don’t know what to do. And that’s a terrifying feeling.

When Adi was younger, I agonized over school choices, over what therapies to pursue, and at what cost. Quality of life. But now we’re talking about his actual life. The wrong choice here could be deadly. We could spend the rest of our lives second guessing ourselves. I’m exhausted by all of it. And terrified. Because the problem is that no one knows for sure.