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As we near the one year mark since the end of Austin’s cancer treatment, he has a series of appointments, scans and lab work scheduled. Today was a visit with his kidney doctor, our first exclusively with her since early last summer.
All in all, he’s doing very well and is perfectly positioned in the fiftieth percentile for both height and weight. This is a really good sign since kidney disease can negatively impact growth and I was getting a bit worried that he hadn’t been gaining enough weight. Turns out he has stretched from his once chubby short self to a new long lean self (sounds nice, doesn’t it?).
We reviewed his blood pressure medicines and decided to take him off one in favor of another. I’m pleased about this because the one he’ll soon stop is a diuretic, making my four-and-a-half-year old very dependent on nighttime diapers. He pees like crazy between dinner (when he takes that particular med) and midnight, often leaking through his diaper . . . and sometimes leaking through two diapers! Mark and I have considered this as a minor and manageable side effect (I mean, really, if washing his sheets every other day is my biggest worry, I can’t complain much), but Austin himself has been increasingly concerned about needing a diaper. In fact, when he went to his cousin’s eighth birthday sleepover, with boys much bigger than him, he told me ahead of time that he was going to change in a different room so “nobody would see.” Of course, as a parent, making sure your child feels that he belongs and won’t be made fun of is of utmost importance, so I’m eager to try this new route.
She ordered a bunch of labs — the renal panel we usually get, plus some measures of bone density and vitamin health — but we won’t get them done until his next blood draw in a month, so there are no new numbers from today. She did say that based on his recent creatinine levels, his kidney function is around 50% (as estimated GFR of 53). Not bad considering it was below 30% last spring and summer. Of course, there’s no way to know if the kidney will continue to function this well or if we’re in something of a honeymoon phase, but we’ve learned to take what we can get. If it’s the same at the golden two-year mark (when, from an oncological perspective, he would be eligible for transplant), we would not transplant him. Transplants aren’t allowed, or covered by insurance, unless a patient’s kidney function is below 20%. So, hopefully (always, always, everything is tempered by hope), we have a ways to go yet before that step.
Another day, week, month, another appointment, scan, test . . . we have our Austin, he has his kidney, and all is good.
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.
There were a lot of other doctors’ appointments that took place on Thursday and Friday . . . or didn’t take place. The vein mapping for placement of a dialysis catheter was postponed. It had been double booked with the chest CT, which obviously took precedence especially due to the concern with the liver. The vein mapping, as I explained last week, is for something we hope is way off in the future and actually something we hope never ever comes. So that one’ll just have to be rescheduled (or not).
Then on Friday, Mark took Austin to have his stitches removed. Remember how the hand surgeon had been upset with the type of stitches the ER used? Well, with good reason. He removed the three from Austin’s palm (the least sensitive and least mangled part of his hand) amidst so much screaming and squirming that we rescheduled for this Thursday so they can do it while Austin’s under sedation. They’ll just administer propophol through a gas mask and rip them out in ten minutes, saving the little guy any more unnecessary misery.
The hand is definitely healing though. When we change the dressing covering it, I’m no longer worried about infection since you can tell it’s all closed up nicely. Thanks goodness there.
And, and this is the best part of all, his Thursday labs revealed that his creatinine has lowered yet again. Still not in the normal range for a child his age, but getting mighty close.
Every time I look at him dancing about in his goofy way, playful and happy and unencumbered by disease (or — often — by clothes), I feel so thankful we have made this choice. We will never regret having these days.
Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.
Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.
It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.
But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while. Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.