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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.

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.

Of course, all this hemming and hawing about what to do next could be quickly rendered null and void if something suspicious shows up on that kidney.  Austin has an abdominal ultrasound this Thursday morning, which, as you may or may not remember, is all we’re allowed to do with a GFR under 30.

His kidney isn’t functioning well enough to filter out the contrast he’d need to drink for a CT scan or the gadolinium needed for an MRI. In fact, for patients in end-stage renal failure — which is several steps beyond where Austin is — MRIs are associated with this horrific condition that causes thickening of the skin and organs . . . and has no treatment. Basically, your organs keep thickening, leaving you completely debilitated, until you just die.  Not something I’m prepared to sign my okay to on a routine consent form.  So that leaves only ultrasounds which are good because they don’t expose him to unnecessary radiation but aren’t quite as precise in finding small or hard-to-detect growths. We’ve arranged for all of our ultrasounds to be done by the best doctor possible, one who knows Austin’s kidney very well, so that makes us feel confident that this method of “watching” is good enough.

That will take place this Thursday and then Friday Austin needs yet another eight-hour blood transfusion. His kidney is not making something called erythropoietin which stimulates the production of red blood cells, so his hemoglobin can’t fully recover from the effects of chemo. (Anybody have to consult an online dictionary to get through this post? I did, to triple-check my spelling!) This will be the first time he’s had blood since the removal of his PICC line so we’ll see how he does with a peripheral IV in his hand.  Hopefully one will do the trick and not be “blown” by the heavy volume over the course of the day. Inserting a second IV halfway through might just be too much for the little guy.

So, we’ve got a few days that will feel like we’re back on the hamster wheel of treatment. And then it’s off to Chautauqua for a weekend of boating and fireworks. Start countdown now . . .

Today is not PICC-removing day after all.  There was some confusion about whether or not Austin actually needed blood and it’s now all been moved to tomorrow. His hemoglobin is not low enough to require a transfusion right now but it’s steadily declining so his oncologist said we could either keep the PICC in and give him blood next week or give him blood through a peripheral IV next week or give him blood preemptively tomorrow while the line is still in. If only all our decisions could be so easy!

Good thing Austin’s sense of time is a little fuzzy. I told him it was moved to tomorrow and he said, “The one day after this day?” just to make sure. Yes, honey, the one day after this day. The PICC hasn’t been all that bad, nothing like I expected when I walked into the pre-op room back in January, hoping for a repaired Mediport, only to see Austin with a bandaged arm. And my heart just sank and I thought, “Oh come on now, not a tube dangling right out of his arm! That’s gonna get stuck on things and get dirty and probably get ripped out by him or his brother!” It seemed like such a big deal in that moment (I just reread that particular post and everything seemed like a big deal right then) but we’ve all been pleasantly surprised by it. It doesn’t itch him like the Broviac used to and aside from that crack in the tubing back in March that required an extra surgery and a few scary failed-flushing attempts, it’s always worked the way it’s supposed to.

But it will be nice to not have to flush it three times each day, including late at night when I have to finagle the line out of his pajama sleeve of the arm he’s inevitably asleep on. And he is most thrilled to take a bath without keeping his left arm propped on the edge of the tub, all wrapped up in Press n Seal and tape.  I think he’s almost as excited for that as he is to go swimming.

And now, just the one day after this day.

I completely acknowledge the fact that my weeds in the garden analogy fails to even attempt to answer Austin’s primary question: Why do children get cancer? I have no answer for that one, other than the unsatisfying response I give Braedan every time he asks it: Bad luck.

“Bad luck” is simply the best I can do, because children with cancer sure doesn’t make any sense to me.

But, sensible or not, we live with it so . . . we’ve had a fine week. Austin went to school for another three days, including a field trip to the Nature Center “to look for bugs.”

His labs on Monday were fine so he didn’t need any blood products until today when we had one of our full day transfusions. He’ll be back in the morning for platelets, which we expect each day next week as well. His other blood counts are too low to allow him at school anyway so I guess we might as well spend our days in the hospital.

He is getting excited for the CureSearch walk and loves to hear the names of his friends and classmates who will be joining us. If you haven’t signed up yet, you can do so here. The organizers do want children to be registered, even though they don’t have to pay anything, just for planning’s sake.  They’ll have balloon clowns and face painters so it is definitely a family-friendly event. Strollers are welcome although only the very young should need them because it’s quite short — I think just around the interior circle of Wade Oval. I know that they want active cancer patients to be able to participate so I’m pretty sure everyone else will be able to handle it too.

And if you can, please wear something red, Austin’s favorite color.  This will allow us to easily find each other and will signify our strength as a team. Also, I don’t expect people to do any separate fundraising — your presence is enough — but if you have a network of people you’re comfortable hitting up, go for it.  In fact, the walker who raises the most money between now and the event will win two tickets to a 2010 Cavs playoff game. That’s almost as much motivation as finding a cure for childhood cancer!

Three guesses where I’m spending the night . . .

We went in this morning for labs and found that his platelets have risen, slightly. His hemoglobin was a bit lower though, so he needed both blood and platelets. It’s not unusual, you know, to need blood products when you’re receiving chemo — it does destroy blood cells after all.  But this is a bit much by almost anyone’s standards.

Yesterday, they gave Austin platelets from a single donor, instead of the typical “mixed bag” hoping they would stick better. They decided to do the same today but to also increase the amount, which meant concentrating the platelets so that the overall volume doesn’t add stress to his kidney. That took an extra hour or so, which we whittled away watching construction. (I have yet to figure what what on earth they’re building down there and I know it has caused many a traffic headache, but I am eternally grateful to all those bulldozers and front loaders and dump trucks for providing so many hours of entertainment.)  By 4pm, he had started platelets, but his nephrologist (kidney doc) was worried about the large volume of blood on top of that so she decided to slow down the blood transfusion from the usual four hours to eight hours and to give the kidney an hour’s rest halfway through. Needless to say, that puts us somewhere in the middle of the night at finishing time. So . . .

I’m home now with Braedan and Mark’s there with Austin, another round in our rousing game of musical caregivers.  I’ll spend the night and if those counts manage to rise enough, we’ll be sent home “early” tomorrow. Whether that means early morning, early afternoon or early evening, we have yet to find out!

It was a good thing we squeezed in those two normal days, sandwiched as they were between much longer hospital visits. Yesterday, he had clinic after radiation, which isn’t bad except that there is so much waiting involved. Waiting for lab work to return, waiting for doctors to be paged, waiting for decisions to be made. It’s just tedious, especially with a three-year old to drag around, feed and entertain. And then today he needed a blood transfusion so this turned into another seven hour day (too bad I don’t get paid for this!). It’s sad when every department I leave, people call out, “Bye, see you Monday!”

But Austin is the constant trooper, managing to find fun wherever he goes.  He’s been a little less energetic (which, in Austin, goes virtually unnoticed) and hasn’t had quite the same appetite as usual, but is still feeling generally fine. His blood counts have dropped significantly since Monday so no more school for a while, but right now he’s sledding with Daddy and Braedan, so who cares about blood counts?

We’ve made it through the first week of Nuepogen shots but I haven’t gotten any better at it. I am extremely slow going in, as I’ve always been on myself (much to the horror and disbelief of those watching me). So when I say we’ve made it through the first week, that’s only because he’s been sedated!  A few of you who are nurses have offered to come over and give him his shots and I will shamelessly take you up on those very kind offers. Better he fear you than me. Plus I trust you’ll be a little quicker at it. He needs one tomorrow and Sunday, around 9 am (which I’m sure we can tweak by a little if necessary).  Let me know if you’re interested — first come first serve!

He had his mediport de-accessed this afternoon before we left. I’m not sure if that’s the right word to describe it but they pulled the needle out so all that’s left is the button safely tucked under his skin. And seeing how happy this made him almost made all those access pokes worth it. He jumped up and down as he announced to Mark, “They taked my dangly thing out! Look, look, no dangly thing!” and then proceeded to roll around on the floor to show how free he was.

That’s my boy.

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