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May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!
Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin. We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.
So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!
That kidney is indeed recovering.
Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?
Springtime would be nice!
So, yesterday was pretty good. As we’ve all had to learn (the hard way), nothing in this game is ever straightforward, there are always always nuances.
First, the good stuff: His kidney and liver are unchanged. The spot on the liver is still there; it’s still hard to see clearly (visible in some planes but not in others) and still impossible to identify but it hasn’t grown and hasn’t spread, which makes it highly unlikely that it’s a tumor. Our oncologist actually thinks we can skip a month and if that next one is also unchanged, we can move to ultrasounds every three months which would be awesome.
His bloodwork was also good. A new low for his creatinine which means that kidney is just working away. The normal range for a small child is 0.3 to 0.8. Back in April and May, when he was well on his way to full blown renal failure, his creatinine was as high as 1.75. His previous low five weeks ago was 1.03. Yesterday’s? 0.87. Yup, that’s right–almost normal, almost perfect.
His hemoglobin continues to lower but at a very slow rate. I’d been thinking he might finally need a blood transfusion, since the last was eleven weeks ago, but it looks like we’ll get at least another month before that. So again, good news.
Now for the chest CT . . . and the nuances. The official report noted two tiny nodules, less than half a centimeter in size. Tiny little spots that, of course, are impossible to identify. Nodules are harmless, tumors . . . not so much. The radiologist went back to look again at the last scan from August and determined that yes, the spots were there then too but they’re so small that she didn’t even note them in that report. Not that they’ve grown — they haven’t — but for some reason she was able to see them more clearly on this particular scan.
Most of Austin’s previous chest scans were done under sedation, which causes part of the lungs to collapse slightly, meaning that we can’t compare the two most recent scans to the many done before. So ultimately we don’t know if these little spots have been there for years or if they appeared sometime in the last six months. Dr. Auletta said that no one would call these cancer; no doctor or radiologist studying these slides would consider these spots anything worth worrying about.
So we won’t either. We’ll check again in three months and hope for news that, if not better, at least isn’t worse. We know this process will never ever be without questions and unknowns and small shadowy spots that could drive you crazy . . . if you let it.
But we won’t.
Oh, and when we pulled in the driveway at the end of our long afternoon, I discovered three women I’ve known all my life, old neighbors who are now grandmothers, sliding down the slide from Austin’s treehouse. They’d passed by on a walk and decided to come back and take a peek and then of course wanted to see the inside and once up on that platform found that it was easier to get down by slide than by ladder. They were all a little embarrassed to have been caught back there, but I love it. I’m serious when I tell you to feel free to stop by and check it out in person. I’m happy to catch any of you sliding down our slide.
Like I said, we’ve got no time for cancer. Everything went well yesterday. The ultrasound showed no changes to his kidney or liver. Sigh of relief for that.
We are almost six months out from the end of treatment, if you can believe it. One quarter of the way there. There — that magic date of April 2012, when we can actually use sacred words like “cured” and “survivor,” words we’ve never before allowed ourselves to utter.
His lab results came back great too. I’d been expecting his hemoglobin to drop since it’s been at least six weeks since his last blood transfusion. Well, it has dropped but only slightly and, at this rate, he won’t require another transfusion until November or December. Not only is it nice not to have to dedicate an entire day to that tediously long procedure, but it means that his kidney is producing more red blood cells, or at least losing them less quickly. All in all, it’s very good news.
His kidney numbers all look good too, with his creatinine even lower than before. Seems like every month now, we hit a new low (which is really a new high!). We’ve become increasingly lenient with his diet lately and I’d been worried that his phosphorous might levels might have crept upwards. But no, they’re still in the normal range, which means, of course, that his kidney is processing out all that extra phosphorous (cheese, cheese and more cheese) on its own.
Ah, the little kidney that could. And could and could and could.
Well, the show must go on. The tree was finally removed today and the cable line was finally repaired today (after we were promised it would be yesterday and the day before that and the day before that). So finally, finally, here I sit again at my computer with a quick update of the past few days. Because preparing for this party was not the only thing on my to-do list.
Austin had another ultrasound yesterday, a follow-up from last month’s when we saw that shadow on his liver. (Yeah, that seemed fast to me too.) Well, everything remains as it was. There is still something visible on his liver but it is unchanged from the last time, always good in the world of potential cancer. We again went through the various possible options for finding out what it is and determined that none of them are practical or safe or effective. As our oncologist said, moving forward (or not) all depends on our tolerance for not knowing what this thing is. And, in truth, our tolerance for not knowing is quite high. All the reasons we had against extra action a month ago stand today. So we will carry on and re-image in four more weeks.
His other lab results look excellent. His hemoglobin is still high, which means no need for blood for a good long while (phew). His blood pressure is down, in an almost perfect range for an (almost) four-year old. His creatinine remains where it was two weeks ago, which is good good good. And, in perhaps the best news of the day, his oncologist said there’s no reason to see us again before his next ultrasound, scheduled for October 7. A full four weeks! Woo hoo.
And now, the boys are at the Tribe game with their Gramp and “Uncle Pauly,” the house is (almost) spotless, the tables, chairs and twinkle lights are all set in the backyard and all there is left to do is hope the weather forecast is wrong. Now how hard can that be?
I know it’s been a while, but there’s really nothing much to write about these days. Bad for the blog stats maybe, but good for our lives!
We spent another lovely weekend in Chautauqua with friends, the only photo of which is below (if you look real closely, you can just spy the kids marching out on the dock to throw rocks):
Oh, there’s also this photo, which is too good not to post, of the pie made by Christie and enjoyed by all:
Then home this evening to steamy hot Cleveland, where the kids went for a swim at my parents’. Here’s Austin in his life jacket . . . and nothing else:
Tomorrow the boys start a week of SuperHero Science Camp at the Children’s Museum (and I swear I haven’t been this excited for camp since I was 12). Unfortunately, Austin’s hemoglobin is low again (or perhaps I should say, low still) and he does indeed need that blood transfusion we managed to get out of a few weeks ago. So he’ll miss camp on Tuesday for a lovely eight-hour transfusion instead. Oh well. He’ll be back to superhero status by Wednesday. No doubt.
Well. Listen to this one.
We went in early this morning for repeat labs, mostly to draw blood so they could do the necessary “type and cross” matching in the blood bank for tomorrow’s transfusion, before heading to the ultrasound. Everything went fine with the ultrasound; before we even left, the radiologist (who usually waits to report to our oncologist before giving us any indication of how things look) said everything appeared stable since the last time — he just wanted to double check the specific measurements against previous images before issuing the final report.
So we left feeling good, we’d made it through yet another month with no new growths, ready to plod through tomorrow and then bring on the weekend. Around 4:30, I got a phone call from the hospital and I picked it up hoping it wasn’t Austin’s oncologist wanting to talk. (Whenever he starts with, “Is this a good time? Can you talk?” I get nervous.) No, it was instead his nurse practitioner, which immediately put me at ease because I know she’s not gonna be the one charged with breaking bad news.
And the very first thing out of her mouth was, “Krissy! You don’t have to come tomorrow.” Turns out our routine labs from this morning showed that Austin’s hemoglobin has started to rise on its own, barely squeaking past the threshold that requires blood. So, no transfusion, no IV, no shuffling a sick Braedan from one playdate to another, no eight to nine-hour day in the hospital. All of a sudden (did someone say, “Whoosh”?), we were handed a gift of a day. And not just any day, but a gorgeous sunny-but-not-humid 80-degree Friday before a holiday weekend.
Maybe the small-but-significant difference in hemoglobin was a fluke of the lab — one day’s blood tests looking slightly different from another day’s — or maybe, just maybe, that kidney is indeed picking up and truly beginning to heal. Maybe we don’t need donated blood products every week or month any more. Maybe his body can do this on its own.
The final results from the ultrasound were just what we’d hoped for: no changes since the last time. And Austin’s nurse practitioner ended our conversation with a reminder to come in for labs in two weeks. Two weeks! Finally.