You are currently browsing the tag archive for the ‘oncologist’ tag.

Ah, what a difference a year makes. Last Mother’s Day was not so good. I mean, the weather was nice enough that we were able to go on our annual picnic and hike. But the cloud that hung over my heart at that moment, the horrible certainty I carried in me that this would be my last Mother’s Day with two children, could not be lifted.

Yesterday, on the other hand, was cold and rainy and we didn’t really do much (although staying in your pajamas until 1pm is pretty special), but it just doesn’t matter. I don’t need intricately planned outings or lavishly wrapped gifts to celebrate being a mother. A pile of school-made cards and two sweet boys snuggled up beside me as we wiled away the morning reading Harry Potter in bed is more than enough. (And bacon and eggs — thanks, Mark.)

But the icing on the Mother’s Day cake (oooh, now that’s a good idea . . . Mother’s Day cake) came Friday afternoon with our visit to Austin’s oncologist. Confirming all that I’d reported two weeks ago, his chest x-ray was clear and his kidney numbers hold steady. So, we can now say without hedging that Austin is truly and officially three years cancer-free, 60% of the way to the other, much more pleasant C-word.

Since his new doctor is still learning his case, she showed me an email she had requested from a member of Austin’s team at Rainbow, providing a broad overview of his five-and-a-half years of care. Much of it was formal and technical but I scanned quickly, with Austin quietly Minecraft-ing beside me, searching for any hint of editorializing. Maybe a little clue of his future or a confirmation of what we’d believed was, well, a pretty big deal. And it was there: “Austin has had an impressive and complicated course of treatment since his initial diagnosis in July 2007.” Impressive and complicated, indeed.

Today, we just use the word “impressive.”

Yesterday was our last day as patients at Rainbow. No, we haven’t magically moved to some elusive category of you’re-so-healthy-you-need-no-more-follow-up-care (but if such a category exists, I’d sure like to be placed in it someday). No, no, instead, we are switching hospitals.

I know, that one came as a shock, right?  We love Rainbow, that much should be obvious. We have been thrilled with the care we’ve received there over these five long years and I can honestly say that I feel at home whenever I walk through those revolving doors. So this change is not exactly our choice, but it’s necessary nonetheless. We’ve been chasing health insurance for a while now, constantly switching carriers in order to stay at UH, with ever-dwindling options. Our most recent best option shouldn’t ever have the word “best” attached to it as we’ve been paying 80% of our care at Rainbow out-of-pocket since January. With a kid like Austin, let me just say that that ain’t cheap.

But we’ve been unwilling to leave Dr. Auletta until we felt confident that Austin was well, and reluctant to leave him even then. And now, alas, he’s leaving us. It is for the best, for him professionally and certainly for his family. And we support him in this move entirely, knowing that he can achieve greatness in a position created especially for him and his expertise at Nationwide Children’s in Columbus. Yesterday was his last day at Rainbow, hence the uncharacteristic “clinic of miracle.” There’s a reason those patients were his; he made those miracles happen. He absolutely put his heart and his mind and his energy into caring for his patients every single day, going above and beyond for all of them. For all of us.

So yesterday, we said goodbye to Dr Jeff. And with his departure and Austin’s good health and our ever-changing health coverage, we said goodbye to everyone else too. To the nurses and receptionists, to the ultrasound technicians and coffee baristas. Most of the goodbyes were silent, in my head only, as it would have been too hard to verbalize all that I felt. There were a lot of “It’s not goodbye, we’ll come back to visit.” And we will.

As we meandered the hallways moving from one department to another, I was keenly aware of the days and weeks and months and years we spent inside that hospital. Over many seasons, from one hot humid summer through several seemingly endless winters. A couple of springs and even more falls. For holidays and birthdays, Austin morphing from a nursing babe-in-arms to a toddler in a stroller to my current tumbling schoolboy cartwheeling down the hallways (yes, he did that). He entered that hospital not yet knowing how to walk and he leaves it having just learned how to read.

He grew up in that building. We all did.

And when we walk into the Cleveland Clinic next year, there will be no familiar faces, no exclamations of “Look at him! Is that really our little Austin?” No friendly waves as we pass by no-longer-needed departments, no hugs as we step onto the elevator to find a friend, no chance for Austin to say, “Hey I remember that fountain. I love it there!” I’m sure the Clinic will be fine. I’m certain we’ll receive good care there.

But there’s only one Rainbow.

Oh, and in case you were wondering, the kids did great without me. It was the longest I’d ever gone without seeing them, by quite a lot. But they stepped up to the plate and behaved beautifully and Mark said it was good for all of them to have that time together. He did also say that he’s not cut out for single parenthood (which is probably a good thing). And that the thing that surprised him most was how much laundry I do!

I did fine without them too, mostly because I was off having a great time.  But the second I finished my last bike ride on Friday morning, I could not get home quickly enough.

And sorry to those of you I scared with my “Downhill” title posted on Facebook. I obviously meant it in only the best possible way, but I can see where it was reminiscent of these two posts, “The Fall” and “The Quickening Descent” (neither of which was meant in the best possible way), especially after a week of no updates.

On a separate note, please visit the website of Cleveland’s Red Cross  over the next two days to vote for local heroes. Austin’s oncologist, Dr. Jeff Auletta, has been nominated in the Medical category and is most deserving of the honor.  You can only vote once and it’s very simple and quick.

That’s it. Now I’m off to put away some of that laundry Mark didn’t get to….

Yesterday went mostly well. “Mostly” because there’s never been a time we’ve had scans when the response is simply, “Perfect, great, everything’s just ducky.  Go on your way now, you healthy normal people.” No, not quite that.

First, he had the follow-up with the radiation oncologist which was fine (actually a lot like what I said above). Then the abdominal ultrasound which lasted a good two hours including the long wait time between being seen by the technician and being seen by the actual doctor (I’ve never really understood why they bother with the technician at all if the doctor just has to come and do it all over again, but anyway . . .). There is nothing new in the kidney, which is obviously good news. But there is a spot in the liver. Now, don’t freak out, it’s not a tumor. Or at least we don’t think it’s a tumor.

It’s more blob-like, where tumors tend to be round (heard that one before, right?). The radiologist thinks it’s most likely “fatty infiltration of the liver with focal fatty sparing” which makes the spot. Whaaattt? I can’t explain it any better than that but it’s not anything to be alarmed about, a not dangerous and not uncommon side effect of chemo. But of course, we can’t be positive that’s what it is based on ultrasound alone.

Which brings us to the never-ending and always tricky question of what to do next. The least invasive way to find out what it is is to do an MRI. Unfortunately, Austin can’t have an MRI with a GFR under 30, nor can he have a CT scan with contrast. There’s a liver function test he could have but it would expose him to a lot of radiation, something we maxed out long ago. Then there’s the possibility of accessing it with a needle biopsy, which comes with all sorts of risks of its own.

When I discussed these options with Austin’s oncologist yesterday afternoon, we still hadn’t done the chest CT (which involves no contrast allowing Austin to still get it). Our first order of business was to make sure there were no suspicious spots or blobs in his lungs. If there were, that would be a huge sign that cancer had indeed spread. Well, luckily, I learned by 6pm that his chest CT was clear. That put us at greater ease about the liver because when Wilms spreads it usually appears first in one lung, then the other lung and only finally in the liver.

Ultimately, our oncologist recommended that we simply wait and re-image in another month. There are a whole bunch of reasons this option makes the most sense: One, it’s probably nothing. Two, all the methods of determining what it is pose risks to Austin. Three, if it actually is Wilms that’s spread to the liver, there’s not much we can do about it. Really, that’s the kicker right there. I mean, in a sick kind of way, what’s the point of us having that information? What am I gonna do with it? I suppose I could pull the kids out of school and make sure they see all the beautiful places of the world. I could take Austin to Disney World for his 4th birthday. I could work extra hard to ensure each day had more laughter than tears.

But I do all that already. I already take them swimming every time it’s hot or say yes to the after-dinner bike ride to the duck pond or park. I’m already thinking about taking him to Disney World for his 4th birthday. I already work extra hard to outweigh the daily scowls with smiles. Life seems short and fragile enough, no matter what a needle biopsy says.

As I was on the phone going over all this with the oncologist, he said that they just got a new computer system that generates data in a different way. As he was scrolling through Austin’s record, he could see a graph that showed that Austin has been treated for cancer in thirty-three out of the past thirty-six months. This struck him and, while it didn’t make his decision for him, it did make him wonder about how much he can do for a patient versus how much he can do to a patient.

Mark and I have learned, in these three long years, and Austin’s doctor has learned too, to make decisions for Austin. And I don’t mean to make them on his behalf. I mean to make them for his own good.

I know why Austin enjoys the hospital so much. He has my complete attention when we’re there. All the usual distractions are erased: laundry to fold, computer to check, big brother to care for. Nope, when we’re there, even just for our twice-weekly clinic visits, I have nothing but occasional phone-surfing to draw me away from painting, reading, playing with the little man.

This past Thursday, while Austin received a blood transfusion over three-and-a-half hours, we sat next to each other on a bed in front of an eight-foot window looking down on the construction site six floors below us. We must have sat there “in the sun” for at least an hour, gazing at the forklift and bulldozer driving back and forth across the dirt. Then he sat in my lap on a chair and reminisced about last summer at Chautauqua: “Remember when . . .” he’d start each sentence, recalling boat rides and fireworks and trips to the mini-amusement park down the road.

“We’ll do that again,” I kept saying over and over, already looking forward to our upcoming summer, when cancer could be well behind us. But I know that boat rides and fireworks and trips to the amusement park might not happen too quickly. We might still be in the midst of cancer when summer arrives. We are indeed halfway through the mandatory eightteen weeks of treatment. But those extra twelve weeks loom large on the horizon. The fact that Austin is doing so well, tolerating chemo and bouncing back after each dose, will probably bite us in the ass in the end. As long as his bone marrow hasn’t been totally depleted, we really have no good excuse for stopping treatment in April and will almost certainly continue through July. Ugh.

This protocol, the one designed for relapsed Wilms, actually calls for up to six rounds of the twelve-week maintenance cycle we’re currently in. As I explained a while back, few children are able to withstand the full ninety-week protocol (six 12-week maintenance cycles after one 12-week induction cycle and one 6-week consolidation cycle) because their bone marrow is so completely destroyed.  When we signed on for this treatment plan, we committed to at least one of these six-week cycles and two if Austin was able.

And, of course, as of now at least, he is able. So strong, little Austin, too strong.  If he breezes through the next three doses as he has through the past three, we will definitely be in for the long haul. There’s a part of me that hopes he isn’t strong enough just so we can be done. But, as his oncologist has reminded me too many times, our ultimate goal is not an easy few months or a pleasant summer but survival.

Survival. There’s just no arguing with that.

All is fine. The waiting was ridiculous, more so for us than for you, trust me. But all is well.

The radiologist and oncologist noticed some spots on Austin’s kidney on yesterday’s ultrasound that weren’t present on the previous one and wanted to check with the surgeon to make sure they were expected post-operative marks and not a sign of something worse. They are indeed common post-operative spots and the surgeon was really quite pleased with how the ultrasound images looked, saying this was exactly what he would expect and hope for from a successful kidney-sparing surgery and that we should carry on with treatment as planned.

So carry on we will.

February 2020
« Jan    


February 2020
« Jan