Shred of Hope
First of all, thank you thank you thank you for the enormous outpouring of support and love and sadness that came from all corners yesterday. It means so very much to us to know there are so many people out there thinking about us and praying for us and pulling for us. I have said it before and I will say it again (how many more times I am not sure): We draw strength from all of you.
As I read through the flood of messages yesterday, here and on Facebook and via email and even that old-fashioned thing called the telephone, I smiled and I cried and I felt you around us. When I listened to the morning message from my fellow non-believing friend that said she was wishing for a Christmas miracle, I laughed and I cried and I thought, yet again, yet again (how many more times I will think it I am not sure) how very lucky we are.
We have a plan, of course a very different plan from the one we thought we had yesterday. We’ve decided to skip the needle biopsy because we realized, as Jeff walked us through it, that our next action would be the same (surgery) no matter what the biopsy told us (or didn’t tell us). Confused, yet? Here’s the deal: As I’ve mentioned before, these needle biopsies have a high likelihood of providing no definitive information. So if it gave us “unconfirmed findings,” we would opt to do an open surgical biopsy. If the needle biopsy told us this mass was a nephrogenic rest (one of those pre-Wilms tumor tumors), we would have done a surgical resection (removing at least the mass because if it doubled in size in three weeks it was probably well on its way to being a full-blown Wilms tumor anyway). And if the needle biopsy revealed that this was indeed another Wilms’ tumor, then we would have done a surgical resection.
Ultimately, the needle biopsy is a waste of our time, as it’s not going to give us any information that will change what comes next.
So … what comes next is a CT scan on Thursday just to make sure that his cancer hasn’t spread to his lungs or liver, as Wilms tumor sometimes does. We don’t expect this because it hasn’t spread in more than two years, but we need to make sure, just in case. We’ll check into the hospital tomorrow (Wednesday) evening for pre-hydration, have the scans on Thursday at 2, and then be released home after another six hours of hydration.
Then, after what I hope will be a very happy and Christmas-y weekend, we’ll check back into the hospital on Sunday afternoon for surgery Monday morning. And this is where things get interesting (that’s a cue to start paying close attention). We have decided, upon the recommendation of both our oncologist and the surgeon, to attempt a kidney-sparing surgery. Yes, you read that right. After all that back and forth over the past few months about the pros and cons of another kidney-sparing surgery, and after initially deciding that it wouldn’t be successful and wouldn’t be wise even if it happened to be successful, we are going to roll the dice and give it a go.
The cons (because I know they’re already running through your minds): It might not work. We might place all our hope on this one procedure and the kidney might fail anyway. We know this and are preparing for it, and I don’t just mean mentally. The surgeons will actually place a dialysis catheter in his thigh (or neck?) for temporary use if he does indeed end up needing dialysis. They figure the surgery for inserting it is considerably more difficult than the surgery for removing it, so we might as well be ready. And even if the surgery works, he still might need temporary dialysis, like he did after his first kidney-sparing surgery in October 2007, so this will make that process easier.
The other con, and this is the big one, is that by leaving the kidney in, his cancer might recur again, in another six months or another year, and we’d have to go through all of this yet again. That possibility is real, and scary, but remember that we are in uncharted waters. We have no stats on any other kids with this exact kind of Wilms and, truth be told, we have no way of knowing or predicting if it will return and when and why and what we might do to prevent it.
Which brings us to the pro. The big pro, the huge pro, the reason we’re willing to take this chance in the first place, and that is this: It just might work. We might open up my little boy’s body, for the sixth time in his short life, and manage to remove just the cancer, and all of the cancer, and the kidney might keep on filtering and keep on working and keep on making pee and we just might make it through. This surgeon, new to us since Austin’s last surgery, has actually done two kidney-sparing surgeries on the same child before, and it has worked. Plus, this tumor is still very small, and it’s solid, so they could get clear margins. There are huge and forbidding hurdles in our way, we certainly know that, but but … BUT it might work.
And that little shred of hope is all we need. That is enough.
We might get our Christmas (or our Hanukah) miracle after all.
I have hovered over your blog for the past two days, and have been on my face praying for your son. Just wanted you to know that even strangers from distant places are rallying for you guys.
Jennifer
WOW! This plan makes a lot of sense. There are lots of little miracles inside that little boy of yours … so we’ll wait and see ….. one step at a time ….. Barbara
I am wishing you a Christmas miracle and hope that they can indeed save the kidney. Your plan makes perfect sense and you never know until you try. Good luck!
I am a big fan of logic and that plan makes great sense. This atheist is firmly behind the Christmas/Chanukah miracle happening here.
My prayers are with your family. I anxiously awaited your next step after Monday’s post. I am thinking this will be your Christmas miracle and step by step Austin will beat this awful cancer and get his full life back (along with the rest of your family). I am new to your blog and have gone back and read your whole story from the beginning. It is beautifully written and so inspiring.
I am so saddened that you are having to make these choices, but so happy you have found a gameplan that gives you hope. I will be thinking of you as we light our menorah on Friday night AND as we light up our Christmas tree on Sunday! That star on top of our tree is going to be for Austin to symbolize his strength. Lots of love. Keely
I too am behind this Christmas miracle. You don’t have to be a ‘believer’ to have faith. You and your family will be in my thoughts this weekend, next week, Christmas and all the days after that.
You guys have sure been through it, and the grace and determination with which you fight for Austin is truly admirable. You are role models for parents out there. Lorrie and I will keep you all in our thoughts and have great hope for that Christmas miracle. Let’s save that kidney!
Wishing, hoping, and praying for all of you tomorrow and the months to come. Austin is so special and amazing; I expect the results of his kidney-sparing surgery to be the same. I wish each of you much strength and love to get through this next step.
Christie Chicotel has shared your blog with me and I have been following your family’s story. I am overwhelmed by your strength, courage, and love. I will joining you in wishing for a holiday miracle that brings happy results!
My prayers and good thoughts are with you ALL for the days ahead….We, on Rainbow 2, are ALL pulling for you!!!
I’m a former St Paul’s mom (who never had the opportunity to have my children in the same class as your children…) but have been keeping up with your story back from the Care pages.
Just want to let you know you have yet another family of four who is strongly rooting for Austin and your family. I admire you and the hard choices you’ve had to make. I think you made a great decision myself.
We’ve had our children (Richy and Rachel) include him in their nightly prayers… God bless and know that we have you in our hearts. Christmas miracle? Sounds great to me!
F_I_G_H_T, fight kidney fight! Gooooooo Kidney!!!!
I’m cheering for you all!
Put that on a star with my whoosh!
May love and strength surround you.
Chris
OK Now we are talking! I like the sound of this. Sometimes hope is all you got left, and it is pretty powerful. I am thinking that this is something we can all hope and wish and pray for. Strength in numbers;) Krissy I sure hope this is the answer. I have not stopped thinking and talking about you guys. I don’t know how you are doing it. No two people could have done this better than you guys!
May this be the “little kidney that could” I think I can I think I can!!!!