The Missing Piece
As we’ve been leaning this way and that over the past few days, swaying back and forth, we’ve acknowledged, with a degree of defeat, that there is no one thing that’s going to suddenly appear that will make this decision any easier.
But we were wrong.
This afternoon, as I sat in a reclining chair (you know, just chillin’) down at the hospital while Austin, hooked to an eight-hour blood transfusion, slept in my arms, I held my breath and opened a return email from the lead author of the study protocol we’ve been following. We’ve never had any contact with this doctor, the head of Pediatric Oncology at Children’s Hospital-Los Angeles, whose name I simply typed into Google to search for an email address. His response, which I was quite frankly surprised to receive at all, said that there is NO STATISTICAL BENEFIT for children who did more than one maintenance cycle of chemotherapy. Here are his words, copied from my email: “Due to the small numbers, we were unable to detect any statistical difference or advantage for those patients receiving > 1 maintenance cycle.”
Well. That pretty much does it. Barring anything suspicious on Monday’s abdominal ultrasound and chest CT, that pretty much does it. There are so many known disadvantages to carrying on and no known advantages. How could we not choose to stop? It would almost be crazy to keep going.
We’ve been leaning in this direction, as I think you could tell, wanting to stop. But unsure whether we wanted to stop just because continuing would be so horrible or because it was really the right thing to do. Every time we check in with each other, last thing before drifting off to sleep and first thing upon waking in the morning: “Which way you leanin’ now, honey?” our answer has been, “Weeeeellll, I sort of think we should stop, buuuuuuttttt …”
And now, we can feel like we are making the best decision given the information we have. It is not a victory, not a free pass to the future. We still face every unknown we faced yesterday: His kidney could fail anyway, his cancer could return and be even harder to treat. But at least, we have some peace in knowing we are not skimping out, we are not cutting loose early for selfish reasons.
The big question I assume most of you are asking, because I’ve asked it myself, is: Why does anyone do more than one cycle if there’s no detectable benefit? I don’t have a scientific answer for that but I think it’s because the researchers were trying to find that detectable benefit. They were hoping that four cycles would push the survival rate up to 60% and five cycles would push it up to 65%. But that didn’t happen. Even with extra weeks and months of chemo, the best number they could reach was 50%.
Now that shouldn’t make us feel super confident moving forward, and trust me, it doesn’t, but if this cancer returns, well, it might have returned anyway. I mean, if chemo is gonna work, it should have worked, right?
We had dinner with my parents the other night and my mom came armed with scrap paper charts to list out the pros and cons of each option. My dad had already made up his mind (stop), but the rest of us were still hemming and hawing. Before we left, my mom (still undecided) landed on an important point: Stopping is the one chance, the only chance, we have at a huge victory, at (and you know she didn’t use this word and I can’t believe I’m about to either, but here goes) at a miracle. Stopping is the only way we can ever look back and say, “Wow, we really, really did it. And we didn’t have to sacrifice every last piece of ourselves. We beat that damn thing and we’re still intact.”
We might be able to do both: we might be able to remain intact and still win. And that is what we are going to try to do.
You sure put alot of time and thought into your decision. I know it was not an easy one to make but know that we all support you in whatever you think is the best for your Austin. Now we all have to think and hope and pray. What a long journey you have been on and what a remarkable family you are. You are ALL heroes!!!! Come visit R2 sometime!!!!!…..but not too soon. …..maybe in about 60 years or so.
I always read, always reply and then delete my comments before submitting them. Every comment I’ve ever written you and then deleted has pretty much said “good idea”, or “I agree with you.” I think about your little boy often and hope that each day is a good day for him. I am so glad you got that email today to help you with this decision. I couldn’t possibly imagine what you guys are going through, but I don’t think ANYONE could be a better advocate for their child than what you have been thus far. I think the decision you guys have come to is absolutely right (not that you need an unsolicited opinion from a stranger). Just want to let you know I read your blog & think you are an admirable person. Best wishes from Florida, and I am hoping for the best outcome for Austin.
To all the people who reply,
As Krissy’s mom and Austin’s grammy, it’s hard to tell you how much your comments mean to me — not only are they loving and supportive of my daughter and her husband, but they are so helpful to the process of thinking this out. It’s like “Sophie’s Choice” — there’s no perfect alternative, yet it’s a choice they have to make. (It got a little easier today.) My heart is warmed by the outstretched hand that every one of your replies represents. Thank you all so much for making this one teeny bit easier on my girl who is amazing me every day with her strength. And, Barbara, although I hesitate to single one person out, the mental energy that you put into this is a huge gift to our family. Nancy
I am so happy that you got info to support where you two were leaning anyway. Makes it that much easier. Give that kidney a chance!
I told Mark the other day that what I really wish was that you had no decisions to make out of all this, but short of that, that you had clear and relatively easy decisions to make. I’m glad you got a good, concrete piece of *something* to grab onto to make the call a lot easier. Yay!
For what it’s worth, I’m happy to bring over dinner some night for you anyway, haha!
And p.s., I think that no matter what call you made in this situation, even without this information which is obviously great to have, it would have been the right call because you know that you examined every possible angle, consulted every possible source, and then used your best judgment, given conflicting data and no crystal ball into the future. At that point, you make the best decision you can. Nobody can, or ever could, do better than you guys have in this situation. Bravo.