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Now that Mark and I have had a chance to actually discuss a possible trip to Nashville and all its pros and cons, we have hit upon several reasons why we might want to wait. Well, one main reason really, and that is our fear that the doctors there will insist on running their own battery of tests instead of relying on all the slides and computer images we would bring with us. This would be lousy for Austin both in the moment (because a full gamut of medical exams is just plain unpleasant, whether you’re three or whether you’re thirty) and in terms of his long-term health. Remember, it’s recommended that children have no more than six CT scans in their first ten years of life, due to the dangers of radiation. Austin’s had, well, truth be told, we’ve lost count . . . probably fifteen in the past two-plus years. So, subjecting him to another round a few months before we think it’s medically necessary, and in an unfamiliar environment to boot, seems extra cruel.
We’re going to look into the possibility of Mark and I going without Austin (not the grown-up trip we had imagined!), just to sit down and talk with these doctors, but I’m not sure yet whether that’s even possible. We might have to have Austin admitted as an actual real live and present patient before we’d have the chance for a one-on-one consultation. Mark is not convinced we should go either way, but what I’ve realized I’m hoping for is to have them look fully at all the evidence and then either change their recommendation to the “watch-and-wait” approach we’re (hopefully) adopting or be able to back their recommendation up with some good solid reasons.
You know, the main oncologists want to remove cancer as quickly and completely as they can is due to the fear of it spreading. But Austin’s cancer has never spread. In more than two years, it has remained completely local, right in the same vicinity it’s always been in. Now this does not guarantee that it might never spread, but it seems that if it were going to, it would have done so already. Especially if we think about that tumor that was removed this past April that had apparently been inside him since his initial diagnosis eightteen months prior. And it never moved, it barely grew, and it didn’t seem to do him any real harm. So, while the idea of leaving what might be cancer inside our child is terrifying, the alternative (taking out that kidney and relying on long-term dialysis and transplant) is also terrifying — and more certain.
Talk about being stuck between a rock and a hard place. I really liked this parenting thing better when my biggest dilemma was whether to send Austin to kindergarten at almost-age-five or almost-age-six. Really.
Sure beats the weather here in cool and rainy Cleveland.
So . . . St. Jude’s recommended a resection and biopsy. That means removing the “shadow” to find out exactly what it is, which in Austin’s case means removing the kidney (and you know what that means). Now, this is just a recommendation, not something we are going to do rush out and schedule. It’s also not terribly surprising, especially because, according to Jeff’s description, the doctors were reviewing dozens of cases during Wednesday’s meeting and didn’t necessarily go through Austin’s entire past history, including the two years’ worth of CT scans we sent. In fact, they didn’t even look at the recent ultrasound because their radiologist didn’t think it was “relevant.” So, ultimately, we again think they didn’t really put their full attention to this and are not all that surprised by the automatic recommendation to get as much information as possible (at all costs, as I feared).
Mark and I have decided to finally go to Nashville and meet with them in person. We want the chance to sit down at a table and really discuss all that has happened and all the options moving forward (and all their ramifications). The main guy we’d be meeting with is Dr. Green, the “Wilms’ tumor guru” who has been following along (albeit peripherally) with us since the very beginning. I think it will be much more productive for him to see Austin in the flesh (and not as a series of grey shadows on slides sent via FedEx) and for us to have a real human conversation.
There’s not a huge rush, so we’ll wait until after Halloween (obviously of great importance in a house with two little people) and probably go sometime in the next few weeks. We feel okay about this; not much has changed since yesterday after all.
And we could always use some sunshine and warmer weather . . .
We still haven’t heard anything.
This means one of three things (or maybe it means one of those other things I just haven’t thought of yet): 1) The doctors at St. Jude’s haven’t yet contacted Jeff. 2) They did contact him and their recommendation was the same as his (watch and wait) and he’s just been so busy, it sort of fell off his radar and he forgot to call us (this is, in my opinion, the best option although it seems out of character). Or 3) their recommendation was so extreme (i.e. removing the kidney right away), that Jeff is consulting again with the local docs before contacting us. Hmmmmmmm . . .
On another note, as many of you probably knew when you read the last post but were hesitant to share with me, Jude IS the patron saint of “lost causes”! And I thought I was kidding when I suggested it. Couldn’t they have picked the patron saint of sick children or something? Lost causes? Ugh.
After I had already googled it myself, I got this in an email from Mark, who’d obviously googled it himself: The Apostle Saint Jude Thaddeus is “The Miraculous Saint,” the Catholic Patron Saint of “lost causes” and “cases despaired of.” When all other avenues are closed, he is the one to call upon, and his help often comes at the last moment.
Okay, I get that. This is the place you go when all else has failed and then, at the very last moment when hope is almost gone, they save you. I still think it’s a bad name.
Anyway, just to fill you in on other developments in our life: Still nothing on the house, although we did have a showing yesterday. I’m hopeful that some couple is sitting at their kitchen table right now talking about how much they love this house and figuring out what to offer (I told you I don’t lose hope!).
Braedan continues to love school and is learning to read before my very eyes. And Austin is finally starting to love his school too. He actually clapped as we pulled up the other day. He still cries when I leave him but it only lasts ten seconds and then, in his teacher’s words, he has “phenomenal” days.
So, we carry on.
Well, we’re waiting for a sign from St Jude’s really. What is Jude the saint of, by the way? Hopefully it’s not something awful like “lost causes.” That wouldn’t really be appropriate, would it? Anyway, the doctors at St Jude’s are reviewing Austin’s case today and will let Dr. Auletta know by the end of the day what their recommendations are or if they have ever seen this happen before. (Being “one of a kind” certainly has its down side!)
You may remember that St. Jude’s reviewed Austin’s case back in March and April and their recommendation (that Austin receive flank side radiation) differed from that of both Dr. Auletta and the radiation oncologist here at UH. It also differed from the non-medical opinion of both me and Mark, and it was one we did not follow. Now, I certainly respect and admire all the incredible work that St. Jude’s does for kids with cancer; they are undoubtedly the best around. But I really felt like they just weren’t paying attention to the nuances of Austin’s cancer when they made that particular recommendation; it had so few advantages and so many (and such big) disadvantages. I also wonder if this is yet another case of over-aggressive treatment of cancer in children. Maybe one of the reasons they have such impressive success rates regarding cancer is because those patients end up with other horrible and often life-threatening conditions. It doesn’t do much good to have a child who is ”disease-free” (as in no evidence of cancer) then die of, say, transplant complications.
But I’m getting ahead of myself. We are waiting to see what they say today and how this impacts our plan moving forward. Not quite sure what to hope for, but hoping for the best!
When I looked out the window this morning and saw a fine dusting of snow covering our cars and the top of the swing set, I shook my head and started to say, “I really thought it was over,” but didn’t quite finish that statement because what do I know about over?
I do know we’ve been making the most of our time together, before the battle begins. We went to the Natural History Museum on Saturday, let the boys climb on the dinosaur outside, watched the otters dancing playfully in the water. We took a hike around the duck pond yesterday, sat on some rocks as the geese swam by. Today we went on a “train ride,” about six stops on the RTA, and then out for a breakfast of Mickey Mouse-shaped pancakes and bacon. We’ve taken lots of pictures and let the boys ham it up for the video camera. Mark and I spend a lot of our time watching them both run and jump and play, shaking our heads because it is just so unbelievable. He is so fine. Today he is so fine.
At the Natural History Museum
My favorite boys
But things will change pretty quickly. We’re still waiting for the experts to report back with their suggested plans. I imagine we’ll sit down with Jeff on Thursday or Friday and lay it all out. There’s a possibility we might go to St. Jude’s in Nashville, whether for the initial surgery or for all of treatment remains to be seen. Jeff will help us sift through all the recommendations to decide if that’s necessary. As he said on Friday, there’s no competition between Rainbow and St. Jude’s (“This isn’t the Cleveland Clinic we’re talking about”) and Austin will simply go where he will get the best treatment. We really hope it doesn’t come to that though – talk about making the already-hardest thing that much harder. Without our families and friends around us, without our own house and own beds to come home to, without the familiar faces we’ve come to trust and love at the hospital. And I can’t begin to imagine how hard it would be for Braedan to have his life so flipped upside-down, as if a sibling with cancer isn’t disruptive enough. He loves his school and loves his friends, and needs every little bit of normalcy we can muster. But we’ll do what we have to.
We told him. Braedan, that is. On Saturday afternoon, while Austin was napping and I was afraid to wait any longer because I’d been walking out of the room in tears too many times already. So we sat him down on the couch between us and I started to cry and we just said, “We want you to know that Austin’s cancer has come back.” He looked at Mark and looked back at me and then Braedan, my boy with a vocabulary that puts college students to shame, who can hold a fully adult conversation with just about anybody, took a deep breath and said, “Poopy.” Mark and I laughed and wiped away our tears, “Yeah, that’s what we think too. This is definitely poopy.”
We talked about how it was okay to feel sad and scared and even mad, either at us for having to take care of Austin so much or at Austin himself for getting so much attention or just mad at nothing and everything all at once. He sat up straight and shook his head vigorously, “Nope, I’m fine. Not sad. Nope. Not scared.” My eyes met Mark’s as we were both wondering if we should push, “Hey, do you have any idea how bad this is?” but decided instead to let him protect himself in whatever way he needs to. Right now, the cancer isn’t visible and isn’t conceivable, even to us sometimes, but as we move forward and Austin’s sickness becomes painfully obvious, there will be plenty of opportunities for us to keep talking to him, for him to finally let us know how sad and scared and mad he is.
In the meantime, he told Austin! I had just warned Mark about it, and he said, “Oh Braedan’s not gonna tell him that quickly.” Well, within thirty minutes of waking up from his nap, Austin hears, “Guess what? You got your cancer back!” Oh boy. I talked to him about it then but he really doesn’t understand. He was on the swingset, I was pushing him “higher, mommy!” and he was excitedly awaiting the arrival of his favorite babysitter. So “cancer” doesn’t mean much right now. Good for him.
Braedan & mommy, as photographed by Austin this morning
Mark and I are okay. We have had some truly horrible moments and some truly happy ones. I have vascillated between depths of despair and bits of pure optimism. I spent the first two days completely defeated, like we’d the lost the battle before it had even begun. My mind insisted on returning over and over again to the worst possible outcome, I envisioned scenarios that I cannot put to words for fear that might make them real. But it’s changing, I’m changing. I can feel my strength gathering, toughness and single-mindedness swirling around inside me. I am preparing. We will do this. I will be ready.
I think I must be rising. I am rising.
