Scratch that
Did I mention that this process is a series of ups and downs, a winding road of highs and lows and of ever-changing emotions and ever-changing plans?
We have a new plan, a totally different plan, and Mark and I are very very pleased with it.
We are keeping the kidney, going to let it run its course, see just how much farther it can chug along. There are no guarantees with this little organ, it sure has been subjected to a lot and it has more to face, but the surgery was a success and we’ll leave it there and see what it can do.
We will proceed with radiation exactly as I described, starting this Monday and doing the first four days before taking Christmas and the weekend off.
And we will do chemotherapy. It is a high dose, much worse than what we’ve been through before, but it only lasts seventeen weeks. There are a lot of details I will share tomorrow (or whenever I have a few moments) but here’s the thinking behind this shift.
This type of Wilms’, the kind he has now, has a higher propensity of metastasizing to the lungs or liver. This spreading is halted primarily by chemo. That’s the purpose of chemo: systemic control, hitting the whole body with a poison that can kill any lurking cancer cells. The purpose of radiation is local control: killing the cancer cells in the very spot they appeared.
We have removed the actual tumor (for the most part), so now we treat “locally” with radiation killing any cells that may have spilled in that location. And we treat “systemically” with chemo killing any cells hiding elsewhere. Doing both (and doing it much more quickly than my pie-in-the-sky plan to develop a specific drug-sensitivity profile –something that won’t be widely available for another ten years) gives us the best chance at long-term survival. Taking the kidney out may — or may not — up those chances slightly. It’s not clear, especially because it makes the “local control” issue somewhat redundant. We’d basically be hitting the local cells with a double whammy and doing nothing about the systemic cells.
Does this make sense? Well, I don’t really care if it does or not right now because we feel really really good. We plan to remove the dialysis catheter (yay!) and insert a Mediport (a much improved under-the-skin Broviac line) tomorrow and then go home. Yes, that’s right. Go home. Tomorrow.
This is not going to be easy. This chemo will be pretty brutal. But we did this last surgery for a reason. To see if we can save that kidney and still provide adequate treatment. We believe this will do that.
If someone had told us a week or a month ago that we’d be rejoicing the fact that our child was about to undergo twelve days of radiation and seventeen weeks of highly toxic chemo, we’d think they were crazy. But tonight, we are rejoicing.
This just might work.
Krissy – I LOVE THIS PLAN!!!!! I agree with it completely. I’ve spent the last few hours reviewing all the literature I could find on rhabdomyomatous Wilms tumors, and after a very heated discussion with my husband at dinner tonight telling him all about Austin and what had happened thus far and what the new plans were (before this newest plan), I asked him – what would you do? (He is also a physician, but not an oncologist). And he said he’d just see how far that little kidney would go …. would probably radiate it and do chemotherapy and see where this would take you – since once kidneys are resected, the remaining kidney tissue does enlarge in order to take over the function of what’s been lost, just as our little Abby’s remaining kidney has enlarged to take over function of the other kidney. He reminded me of all the old literature when kids were treated by cutting out the tumors and then treating with radiation, even bilateral Wilms tumors were treated this way, since chemotherapy wasn’t available years and years ago, and the response was in general very good (except for the anaplastic Wilms, which Austin does not have). So I was wanting to write to you and tell you my thougts on this, but on the other hand I didn’t want to influence a medical decision – since Auletta probably has reviewed the literature too, and knows a lot more than we do (though I’ve read just about everything I can get my hands on). I also discovered some other interesting facts about rhabdomyomatous Wilms (which you might already know), but this type of Wilms tumor is much more likely when the child presents at a very young age, and I also found cases in the literature where the rhabdo turned into a typical Wilms tumor after the initial chemotherapy. So, I am really, really, liking this plan. I am really liking it – can you tell? Anytime you want to talk, just give me a call – I left you my cell phone number on your e-mail. I can tell you my thoughts on the more toxic chemo – and some of the adjustments we made with our protocol, that got us through all this. OK – so – marching soldiers – let’s go! Barbara
Krissy, this sounds like a great plan! And Barbara, I love reading your thoughtful feedback!
Krissy – you are amazing. I mean really amazing. We know where Austin gets it from! Merry Christmas! (And I agree with Kate about Barbara!)
Hey, guys, this sounds good — which is as strange to type as it is to read. But the real reason I’m commenting is to tell you that we’re here on this roller coaster with you. Please let us know if we can do anything. Friends of mine at work have also asked what they can do for you. Right now, they, my mom, my church and my family are all praying. If there is ANYTHING else, please let us know!!!
I am sooo excited that spirits are lifted and plans are different from when I was with you guys last(yesterday)!! Things sound good! I am excited for you guys!
Krissy, two more “little” but important things to think about, that the doctors might not think about. Once Austin starts his chemo, you won’t be able to do any more construction projects in the new house, if you’re living there (sanding, breaking down walls, etc) because of the dust and mold it kicks up, and chance of infection from these when Austin’s white blood cell count goes low. So this might influence the date of your moving in. Second thing – when Austin gets his radiation, make sure they give him something to prevent nausea before each radiation (Abby got Zofran). They didnt’ give her the Zofran before her first radiation, and she got nauseated from it. After that they gave it to her before each radiation. It’s a harmless drug and works extremely well (though very expensive) but when they radiate around the abdominal area, it’s much more likely to cause nausea, so make sure they keep Austin comfortable – and give him the Zofran! Barb
I wish everybody could have seen Austin when his first food in 6 days was delivered to his room last night shortly after the docs lifted the eating restriction. When I looked at the buttery made-to-order grilled cheese, the pink yogurt and the red grapes, I thought he’d never eat all that. But true to form, Austin attacked it all with gusto, sitting there on the edge of his hospital bed, little feet dangling out of his royal blue hospital gown along with of course the drainage bag from his incision site sitting on the bed next to him. Such a picture of contrasts. One of his hands is splinted to keep the IV in place, so he had to maneuver carefully in order to break the grilled cheese up into little pieces so as to get the full benefit of its meltiness. Didn’t phase him a bit — he was relishing every bite.
Then, post-meal and pre-morphine dose, he was feeling peppy but of course is tethered to his tubing and restricted to his room because of all the other immunosuppressed kids on his floor. So what to do? Obviously, have a parade. So there was Austin carrying his little stuffed bunny, Grampy careening along behind in a desk chair on wheels, and me in the lead with the IV poll singing the great new classic “Here we go marching round the room, round the room, round the room. Here we go marching round the room. We’re in a parade.” Of course you recognize the Mulberry Bush tune. So, hard to believe but a fun way to spend a Friday night is with one’s adorable grandson who just happens to have cancer and one’s willing husband parading around a room on Rainbow 2 while mommy and daddy get a couple of much-needed hours off. Little Austin is quite a guy.
Krissy, you don’t me, but I know of you through the Heights Parent Center. I was a regular there (and adore it) until I moved with my family to Chicago in June 2008. (I’m still a major Cleve Hts booster!) Through an HPC friend, I learned of your blog last spring and started reading it when my own family was suddenly immersed in a medical ordeal – I had a 3 year old and 6 mo. old twins at home while my husband spent 54 days in the ICU, fighting for his life against a virulent pneumonia and pulmonary blood clots (all probably resulting from H1N1, they now think). I won’t bore you with the whole story as I know you have many pressing things to do, but I just wanted to let you know that I’ve been reading regularly and am praying for Austin. While our ordeal was not anywhere near as long as yours has been, I “get” the medical context and trying to live life in the midst of it – we threw my daughter’s third birthday party in a hospital waiting room (9 days late b/c we kept hoping Daddy would get better) and my husband wasn’t able to attend it, after all, because he had been re-intubated the night before and was back on the ventilator and sedated.
The main thing I wanted to say was this: I am so glad you’re not taking that kidney out (at least not yet)! When I read about this new decision, something deep inside me felt relieved. In my gut, it feels like exactly the right decision.