Oh, it’s never fucking enough. Somehow, every time, no matter what we do, no matter what Austin does, it is never fucking enough.
We got the pathology reports yesterday and, if you were to rank the four possible outcomes from best to worst, this is the third one down. Which, you know, is sort of like a failing grade.
It is a classic Wilms’ tumor, not the rhabdomyomatous kind he’s had in the past. And a classic, official recurrence at Stage 3, not the residual cancer we found in April. Which means, unless this one pathologist in Seattle comes back with a miraculously different interpretation in the next few days, we are going to go back inside and remove that remarkable kidney, the little kidney that could.
And then two years of dialysis. Along with radiation. And maybe (only maybe, my one thing to hope for) a year of high-dose chemotherapy using drugs considerably more toxic than we used the first time.
It’s all very ugly. I am focusing on the one tiny bright spot: that, as soon as he recovers from this now seemingly useless surgery, we will get to go home for Christmas. We’ll then return on the 26th or 27th for surgery. And then we will embark on something that will make everything we’ve been through thus far look like a walk in the park.
Fuck, fuck, fuck.
The Luckiest 
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December 17, 2009 at 9:21 am
Barbara
This is NOT the news you wanted to hear, none of us wanted to hear. But it is what it is – now to move forward with plan B. I agree, it’s heart breaking, after all you’ve been through, and after that kidney has shown itself to be so incredibly resilient, and after Austin has proven to be so resilient, and went right through that surgery with no ileus! Don’t beat yourself up about that surgery, you had to try it, you had to know what was going on, and try to save the kidney. Here’s what I see as the one piece of good news – if this is a classic Wilms tumor, it should theoretically respond to all the traditional treatments. The tumor he had before did not seem to respond to chemotherapy. So while the treatments won’t be “fun”, they will theoretically knock down all those nasty cancer cells once and for all. It won’t be fun at all, especially in the midst of dialysis, but you just have to move forward one step at a time, like a marching soldier, determined to get through it one day at a time. That’s the image to keep in your mind. When we went through this with our little one, radiation and chemotherapy (her Wilms was anaplastic, the dreaded one) we just kept telling ourselves to march through it one day at a time, one foot in front of the other, whatever it took to get through it. And that’s what you’ll do. So time to bring that little one home and have the best Christmas you can imagine, and get ready to do battle! Barbara
December 17, 2009 at 9:29 am
Julia
Oh Krissy, I am so sorry. Please let me know if there is anything I can do. I am always thinking of Austin and your family.
December 17, 2009 at 10:00 am
Jennifer Glasener Taylor
Krissy, I’m so sorry the surgery did not bring good news. I’ve been following your blog here and the heights contingent of the west has been keeping Austin in our prayers. Wishing for the next step(s) to go well for you all.
December 17, 2009 at 12:56 pm
Brenna
I’m so sorry about this. I know it isn’t at all what you had reason to hope for, and I hardly know what to say. That little kidney did get him through a lot.
Keeping you guys in mind. I feel you guys will really get through this, with or without Austin’s kidney.
December 17, 2009 at 2:10 pm
Barbara
Krissy, just another thought on this. If this is indeed “classic Wilms tumor”, which in general responds to chemotherapy (and maybe radiation, I’m not sure) has any thought been given to LEAVING THE KIDNEY IN and going with the chemo and maybe radiation???? and see where you’re at with this? Especially if there’s no evidence that it’s spread to other areas like the lung, what would be the downside to doing that? I don’t know the answer to this one, but have you talked about that with the team? Barbara
December 17, 2009 at 2:52 pm
Krissy Dietrich Gallagher
We have thought about that and it seems that with all the trauma the kidney’s been through plus the potential damage to it from both chemo and radiation, that it would end up failing anyway so we might as well take it out to be extra safe. But the plan is not yet finalized so that will be considered. Thank you for your constant good (and thoughtful) thoughts.
December 17, 2009 at 3:43 pm
Barbara
Krissy, here’s my “two cents” on this. The chemo is not likely to make his kidney fail. We went through VERY toxic chemo with our daughter when she was diagnosed with anaplastic Wilms at age three. We tailored SOME of the chemo to avoid as much toxicity as we could (the doctors weren’t thrilled with us doing that, but on the other hand they understood our reasoning, and looked the other way). When her chemo was completed, guess what? The chemo protocol was revised by the study group, having found it was too toxic – turned out they changed it to just about what we had given our daughter anway (not that we made any recommendations on that, it’s just how it turned out). I don’t know about the radiation – we had to do radiation because her tumor was anaplastic, and that was the recommendation, and we radiated the area where the kidney was taken out, but in the grand scheme of pediatric radiation, it was actually a very, very low dose. So anyway, I guess what I’m trying to say here is, to me this is an option clearly worth discussing. I mean, despite all the trauma that kidney’s been through, it sure does seem to be working well! I did laugh with your story about Austin’s peeing all over you – we had a similar story when Abby was in the hospital – peed all over me once, and all over my nanny once – we laughed to keep from crying. Will help you in any way I can. Barbara
December 17, 2009 at 5:15 pm
Barbara
Krissy, just one more thought on this, as my mind is going through lots of scenarios. I don’t mean to overwhelm you with more things to do. But here is one more thought I had – a couple of years ago I was very intrigued by a presentation I saw from the Huntsman Cancer Institute, a well funded, humane, and astounding cancer institute in Salt Lake City, Utah. The philosophy at this place is to personalize cancer treatment regimens, and part of what that means is to test an individual’s cancer cells against an array of chemotherapeutic agents and other agents to see specifically which ones actually destroy the cancer cells. This is clearly the way chemotherapy will be done in the not too distant future, so instead of the sledgehammer approach, patients will only get the chemo or other agents that actually destroy the cells in their tumor. I don’t know if they’re doing any work in Wilms tumor at Huntsman, but it may be worth a phone call. There are many private companies doing the same thing, but I don’t know as much about these companies or what their track records are. You could ask Auletta about Huntsman or just google them and give them a call. Just a thought ….. Barbara
December 17, 2009 at 2:23 pm
Keely
Krissy–I am so terribly sorry about your news. I know you are angry and sad and every roller coaster of emotions–I cannot even begin to imagine. But I am struck by Barbara’s comment above. You guys have been so incredibly strong through all of this. This is not what you were expecting/planning/hoping OR wishing for, but now you need to keep your strength and fight this phase too. Austin is a soldier, and a damn good one, and he has a huge army behind him of his family and friends. And like Barbara said, you keep marching, step by step and day by day. All of us here will do anything we can to help you get through this and we will be marching with you.
December 17, 2009 at 7:32 pm
Karen Gallagher
Krissy,
Words are not enough! So so sorry. So so sorry!
December 17, 2009 at 9:26 pm
Donna Winkelman
We are crying in rage with you. Austin is so lucky to have you and Mark as parents. You are the best there is. Sending love, all of us wishing we could do more.
December 18, 2009 at 11:50 am
Helen Dumski
Krissy and Mark,
Sometimes there are just not words to express one’s feelings…today is one of those days for me.
My wish is that you have a Christmas day full of smiles, giggles and silly stuff with your beautiful boys.
Helen
December 18, 2009 at 3:06 pm
Chris Holley-Starling
Dear, dear Krissy and Mark,
I stand with all the others in saying I’m so very, very sorry.
And I stand with you at being really pissed: fuck, fuck, fuck! This is not right. It is not fair. It sucks! I hate cancer!
I don’t know what I can do, but if there’s anything at all, just call., please,
Chris