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I’ve always loved the beginning of a new school year. The cooling down of summer signaling the start of my favorite season (which seems to have started a month ago in these parts), the excitement of the first day back to school — finding out who your teacher is (I don’t remember ever receiving that information in advance like our kids do now), seeing old friends, making new friends. My next door neighbor Jenny and I would plan our matching first day outfits well in advance of Labor Day, making sure we looked perfectly twin-like in an effort to further confuse our schoolmates.
And then as I got older, it was field hockey season and Friday night football games, when schoolwork still seemed fresh and classes still interesting. There was a what’s-gonna-happen-this-year sense in the air, a hint of possibility pervading everything you did.
And now tomorrow, my big boy Braedan will finally head off to second grade (his district has managed to schedule the latest start date of any in the city, dragging on the endless fighting between two unnamed brothers who have spent waaaaaayyyyy too much time together lately). I am super excited, Braedan slightly more subdued about the whole thing. He has a fantastic teacher and I think this will prove to be an exciting and engaging year for him.
While Braedan heads off to school, Austin and I will kick off Childhood Cancer Awareness Month by going to the hospital for a day full of labs (blood counts and renal function), abdominal ultrasound (to check his kidney and liver), chest CT (to look for possible metastasis to the lungs), ECHO (to check 1) the size of a heart already enlarged due to years of high blood pressure and 2) possible damage caused to said heart by chemo) and a visit to the oncologist. I plan to have all that completed in time to pick up Braedan at 3:15 (luckily, my mom is on standby to relieve me at the hospital if things take longer than expected, which we really should expect by now).
We’ve packed it in over the past two weeks with a last minute mid-week visit to Chautauqua, where we hiked through the stunning Panama Rocks:
A trip to the zoo yesterday (post-crowds since most schools were alreday back in session):
And today, we had our requisite end-of-summer trip downtown for lunch with Daddy, which always requires dressing “like a lawyer” (the ties didn’t last through lunch like last year):
Now the backpack is packed, lunch is ready, clothes are clean. Time for a bath and early to bed. And a new year begins ….
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
Tomorrow are Austin’s one-year scans. He’ll have his usual procedures: labs drawn, followed by an abdominal ultrasound to look at the liver and kidney, followed by a chest CT, followed by a visit with his oncology team. And we’ll follow our regular schedule: a normal morning at school, then lunch at the fountain outside the hospital, then many hours of roaming back and forth through the underground maze from one appointment to another.
The radiologist usually gives me a basic rundown on his findings during the ultrasound, so that information I’ll have before we even walk out the door. The CT scan takes longer to read (or longer to be read, is more like it), so we might not have official results from that until Friday. Some of the labs are quick and we’ll have those back by the time we return to the cancer center after scans, but the kidney numbers — which we await with bated breath — won’t come until after we’ve gone home.
Of course, we hope for no changes to his liver, kidney or lungs and either an improvement or maintenance in terms of kidney function. We feel good, hopeful, optimistic, but we’ve always felt that way, even when we were way off base. He seems so normal and vibrant — but he’s always seemed that way, on the outside at least, even when things were going horribly wrong on the inside.
So, we take this one step at a time. And potentially, hopefully, as tomorrow comes to a close, we will find ourselves one step closer to an end. Not the end, because that will never come. But an end. Which would be good enough.
This was the day last year when . . . oh no, don’t worry, I’m not going to replay every miserable moment of last winter. If you want to walk through that heartache and misery all over again, you can scroll down to “Archives” on the left and click December 2009. In the meantime, I have a somewhat lighter story to tell, still replete with drama and suspense.
Braedan had an appointment with the psychologist this afternoon and Austin was scheduled to have labs drawn. After about five hours of nonstop snowfall, I briefly considered canceling but figured, “Come on, it’s Cleveland, I’m used to snow. We can surely make it the three miles down to the hospital.” I was largely motivated by the fact that Austin and I had baked zucchini muffins and pumpkin bread to bring to the families on the oncology floor, along with fresh fruit and coffee, for breakfast tomorrow. Plus I was finally going to clear all the donated toiletries out of my mudroom (even my mudroom gets cluttered) and deliver them to the Ronald McDonald Family Room.
So we bundled ourselves in snow gear and picked Braedan up from school fifteen minutes early (mostly so we wouldn’t get stuck in the mad rush of parents swooping in to rescue their children from the first major snowstorm of the year) and down we drove. It was slow going, visibility was negligible but it wasn’t rush hour or anything (foreshadowing, foreshadowing) so we made it just fine.
Braedan had a great session, Austin’s hemoglobin has actually gone up a tiny bit instead of down, delaying the need for a blood transfusion yet again, renal numbers held steady and all was well. We lugged suitcases and backpacks full of goodies clear to the other side of the hospital (Braedan: “This place is like an underground city, Mom.”). The nurses were thrilled, happy to see their healthy, thriving little ex-patient. We chatted and wandered around the halls hanging up signs announcing the breakfast, when someone asked us how we planned to get home. Well, drive, . . . how else?
Then the nurses pointed to the line of cars sitting dead still on the road, not having moved for nearly an hour despite ambulances coming through in both directions. Total and complete gridlock. The line out of the parking garage alone would have taken more than an hour. So I fed the boys some high-sodium junk in the cafeteria, unloaded as much gear as possible into my car, piled on extra layers of clothing . . . and off we walked.
Thankfully, my parents live about halfway between the hospital and our home, so it was less than two miles but solidly uphill and through a full ten inches of snow. But my boys dug deep and turned the whole thing into a wonderful wintry adventure. Austin needed to be carried on and off (mostly on) but Braedan didn’t complain even once, except when I tried to enlist him in a rousing rendition of 99 Bottles of Beer on the Wall. Even Austin, safe in my aching arms, was smiling and catching snowflakes on his tongue.
We arrived after 45 minutes of hiking, tossed our pants and socks in the dryer while we warmed ourselves with hot chocolate (them) and wine (moi). Mark had driven about five miles in two hours before finding a place to stop and eat while waiting for the traffic to thin. We were all home and ready to plow the driveway before 8.
The little beans are sleeping soundly in their beds, the snow is still falling outside, the families at the hospital will fill their bellies with homemade treats tomorrow and I will return to find my car in the parking garage, where, as Braedan noted, “it’s used to sleeping.” Better than last year, that’s for sure!
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.
Last Tuesday, we went to the Natural History Museum and I took some photos of the boys sitting on the stone bear outside, right where we’d taken pictures last March. Check out the difference:
More hair, same big smiles
To see these images of my boys sitting in the exact same spot, just eight months apart, makes me appreciate just how far we’ve come. A long long way.
So long, in fact, that it’s time for more scans. This Thursday, he’ll have his usual monthly labs and abdominal ultrasound, followed by the every-three-months chest CT. It’s always a little unnerving to go through these tests. I don’t actually believe that anything bad will show up, but I can’t help but play out the scenarios in my mind. I always imagine the conversation with our doctor, the heavy “Can you talk?” on the phone, the stunned silence, the devastation, the resolve to fight yet again.
Or the opposite, which is what we should get, better get: The happy news, no changes, all clear (or mostly clear, which would be good enough). The relief, one month closer, another small victory to celebrate. A long way. We’ve come a long, long way.
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.