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Did any of you see this sweet little bean in the Sun Press last week?
He was photographed in the game room at the Boneyard, during a fundraiser for Rainbow. It’s sort of a strange picture, I think because of the contrast between the dark room and the super bright flash. But what I like best about it (besides that proudly displayed — and dirty — hand bandage) is that it says he was “treated successfully” for cancer two times at Rainbow Babies & Children’s Hospital. I mean, if it’s in the paper, it must be true, right?
In other super exciting news, I just got a message from our wish coordinator at Make-A-Wish and she said that they have scheduled Austin’s treehouse to be built this fall and it should be completed by the end of October. Weather permitting, of course, (which you know, is never promising), but still, pretty exciting stuff . . .
Now off to sleep — Braedan’s first day of first grade tomorrow!
Hi ho, it’s off to work we go.
Daddy wears a tie to work every day, so, naturally, yesterday the boys insisted on wearing their ties (left over from a wedding many years ago) too:
Once downtown, they quickly raided Mark’s candy jar before smiling for some photos:
Then today, we visited Braedan’s new classroom, although have yet to meet his teacher. We did, however, encounter a few “big kids” on the playground who described her as both “great” and “awesome.” I almost paid them off in bubble gum to see how that lifted Braedan’s spirits.
And later, while doing our last minute school shopping, I suggested buying a new blue soap dispenser for our downstairs bathroom until Braedan, with an exasperated huff, said, “Mom, that’s glass! Don’t you think we’ve had enough trouble with glass lately?”
I guess it’s time for that child (or his mother?) to go back to school.
In other unrelated news, remember that old house on Edgehill? Yup, still for sale. We almost sold it in July but ultimately turned down what we thought was a terrible offer. We’re now selling it ourselves and it’s listed here on For Sale By Owner. Please, please, please, share that link with anyone you know you might be looking for a house in Cleveland Heights. We’re hosting an Open House this Sunday from 12 -2, so send any and all possible interested parties on over.
It truly is a wonderful house, but happens to sit in that in-between price range: nicer and more expensive than a typical first home but not so large or fancy that those untouched by the economic downturn would choose it. For most of our potential buyers, it would be a second house upgrade, which means they have a first house to sell, which means (of course) they’re deciding to wait it out.
But, you know, I look at this and know I can’t complain too much about anything:
We are indeed home. There were no additional delays yesterday, despite a worrisome IV line that required some tiresome arm positioning, and blood was finished by ten past one. I woke up my sleeping boy, who aroused himself long enough to scream bloody murder in my arms as said IV was finally removed, spurting blood all over both of us. We quickly departed and were home in bed by 1:30.
Today we were right back in the swing of things, playdates and a hike along the creek at Squaw Rock followed by a picnic dinner and much wrestling in the grass with friends at Wade Oval. Tomorrow is our annual end-of-summer trip downtown to meet Daddy at his office and go out to lunch, for which Austin is most excited.
So, as quickly and deeply as we plunge into that dreaded world of the sick, we likewise fully re-embrace the world of the living. Here we are, here I am, shouts Austin in his every move, let’s make the most of it.
When I wrote, at about 2:30 this afternoon, that his blood transfusion had just started, I was wrong. It started at 5:30. Yes, 5:30! Despite the fact that it was ordered at 10 o’clock this morning and despite the fact that it takes almost eight hours to transfuse. No good reason, either, just vague excuses from the blood bank about it taking extra long. Puh-lease. I am beyond mad about this one. Somehow when you’re in-patient, the fact that you could actually have some sort of a schedule — or actually want to exercise any control over it — goes completely out the window.
Oh well, he’s hooked up now, has finally passed the 24-hour mark with no fever allowing him to be released from his room to race around the hallways with the other “sick” kids and we are still leaving as soon as he’s done, even if that is at 2am.
If it’s not one thing, it’s another.
Now that the hand has (mostly) healed and the kidney is (mostly) bouncing back, we’ve allowed ourselves to fully embrace our normal lives. We’ve allowed ourselves to believe that we lead normal lives.
But we don’t.
When Austin had all his scans two weeks ago, his hemoglobin was low. Not below the threshold that required an immediate blood transfusion, but on its way. His doctor recommended coming in the following week which I pushed off until this week because I didn’t want him to miss camp. And then over the weekend, he got sick. A fever, sore throat, complaining about his ear hurting, long and fussy nights. So yesterday, we had to go to the clinic anyway to match his blood for the transfusion and I asked for a doctor to see him just to be safe.
Weeeelllll: Fever, ear infection, suspected dehydration (which didn’t turn out to be the case, luckily) and most likely, anemia. So, you know what comes next, right? They placed an IV in his arm, started him on fluids and IV antibiotics, and we waited. And waited. I sat in a small chair with this big sleeping boy, sweating out his fever, in my arms. The hours ticked by until they found us a room on the over-crowded in-patient floor and over we went.
Another long and restless night, with Austin waking up every time his blood pressure was taken or every time he rolled over and became tangled in his IV line. Then he’d request that I join him in his bed, which was many times more comfortable than the rubber bouch (bed-couch) I usually sleep on. But by now he was sweating out the IV fluids and soaking the sheets underneath him, so I was back and forth, back and forth between bed and bouch, until we both finally slept soundly from 5 until 8 (Austin until 9:30 actually).
His fever has passed, and his kidney numbers look fantastic (which, of course, is all that really matters) and he is finally, just now, starting his transfusion, after a long and boring morning quarantined to our room. The blood, lest we forget, takes seven to eight hours so it may be past his bedtime but I will fight to be released as soon as he’s done.
One more night, one more time, one more brief trip down this dark road. Every time I dare think we are passed the danger zones, every time I dare imagine that we have a wide open future ahead of us, fate or bad luck or something steps in and snaps us back to reality. Not so fast, it says. You may feel normal every now and again, but you are not.
But, despite hospitalization for every little ear infection and sore throat, I hold tight to the belief that we have a wide open future ahead of us. That one I will let go of.
Pediatric Surgery, known to we hospital insiders as “Peed Surge,” a place I’ve visited far too many times over the past three years . . . is somehow where we ended up yesterday.
No, there is not another freak accident to report, just a freaky sort of day, where everything seemed upside down and backwards and I couldn’t quite figure out why we were where we were.
On Wednesday afternoon, the secretary from the orthopaedic surgeon’s office called to schedule Thursday’s appointment to finally remove those stitches. She said, “1:30” and I quickly said, “Oh perfect,” relieved that the boys could stay at Dinosaur Dig camp until noon. Then she said we needed to arrive at 11:30 and that Austin couldn’t eat in the morning.
Oh bother, I thought, why on earth do they schedule kids in the afternoon if they’re not allowed to eat anything? And why on earth do we have to be there so darn early if this is supposed to be a ten-minute procedure? But I figured I knew my way around this stuff and didn’t ask any questions (insert foreshadowing music here). I got Austin up early and gave him a few bites of applesauce (more foreshadowing music), along with his morning meds, and dropped them off at camp for a quick two hours.
I picked them up at early at the Children’s Museum, which happens to be located a mere quarter mile from Rainbow (more music), then brought Braedan to a friend’s house and continued on my way with Austin to the hand surgeon’s Chagrin office, which was where we’d seen him for each of the past two weeks. Twenty-five minutes later we arrive and the woman checking people in was very confused when I said why we were there. She made a quick phone call and then told me, “He’s listed here for surgery at 1:30 downtown.” Surgery? What do you mean, surgery? “That’s what it says in our system. Are you familiar with Rainbow Babies’ & Children’s Hospital on the main campus?” Huh. “Oh yes,” I say and leave in a huff, retracing our steps all the way back, past our house, down the hill, into the all-too-familiar parking garage.
By this time, Austin, exhausted from begging for food, had fallen asleep, so I carry my 37-pound boy in my arms to the pediatric sedation unit. The woman there got the same confused look on her face and, not seeing his name on the list, called over to Peed Surge. Yup, they were waiting for us.
Good thing I know my way around that hospital with my eyes closed. Down one elevator, through the halls, up another elevator, follow the blue butterfly stickers on the wall and finally, we found ourselves back in Pediatric Surgery, for the eleventh time in Austin’s short life.
They checked us in after a short wait and we had to go through the whole rigmarole (yes, that’s really how you spell that word — I just checked): medical history, medications, reactions to blood or anesthesia, etc etc. The orthopaedic surgeon explained apologetically that he isn’t allowed to administer sedation himself, each piece of the health care puzzle now so highly specialized that you have to go to ten different departments to get anything done. He was surprised his secrtary hadn’t explained it better, but I think maybe it was my own fault for assuming I was already an expert. It was still expected to be a minor procedure, propophol through the gas mask and quick removal of sutures. I felt sort of silly that we were even there, getting ready in pre-op, just to pull out some stitches! A far cry from the myraid other reasons we’ve been in that room.
And of course, being in that space, we bumped into Austin’s nurse practitioner (“What happened to Austin now?!”), the surgeon who did December’s kidney sparing surgery (“What are you doing here?”), the surgeon who did his first two surgeries three years ago, and eventually even his oncologist who was checking on another patient coming out of surgery (“Krissy. . . ? Are you guys okay?”).
And then the anesthesiologist showed up and was most concenred about those few bites of applesauce he’d had. I tried to excuse myself by explaining that I thought he was going not to surgery but to sedation, where you’re allowed to eat four hours prior, but she was not pleased. She wandered off to see if we could reschedule for 3, which I was dreading as Austin had been crying for food for the past hour and a half already. Eventually she conceded we could move ahead and do it, only after listing the rare but lousy things that could happen like applesauce coming up and getting stuck in his lungs, giving him pneumonia that would result in hospitalization. She thought the risk was negligible and I thought it sounded better than dealing with an increasingly starving pre-schooler for two more hours, so I signed the consent and finally, finally, it was time.
I donned my space suit and walked into the operating room with him, leaving only after he was knocked out, then wandered the halls until I had enough phone service to call Mark (“You’re where??”). Fifteen minutes later I was back in post-op, standing by his hospital crib, waiting for him to come to. Then another thirty minutes of recovery, complete with a popsicle and juice, before we were finally on our way.
No damage at all to the hand. The doctor even said he doesn’t need to see us for follow-up unless we have a concern (“You guys spend enough time in hospitals.” Do we ever!). Austin’s now free to swim and dig and grip and do all those other things that kids with two working hands do. And Mark has already taught him to bat as a lefty, so we’re all good. All good.
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.
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.
Well, a few stitches can’t slow this boy down. Aside from missing his last week of swim lessons (much to his dismay — not), he’s doing everything normally: running, playing, climbing. Here he is at Horseshoe Lake Park a few days ago climbing higher on the rope structure than he ever has before.
The boys even went to Chautauqua with my parents from Saturday to Sunday, while Mark and I hit the eastern Ohio wineries with some friends, a nice and much-needed break for us. Because, did I happen to mention, that last Tuesday, the day of “the incident,” was also our 8th wedding anniversary? I know, just our luck, right? We had celebrated on Monday by going out for a nice dinner, knowing that we’d be in Kalahari on the actual day. And then were thinking we might get to go out for a drink that night after Mark’s parents came back from their dinner to watch the boys in our hotel room. But no, instead we spent another anniversary in a hospital, three years after “celebrating” our 5th as newly minted parents of a child with cancer. The 8th, while bloodier, was definitely better.
And in the never-slowing-down category, tomorrow we head to the hospital for a whopping five doctors’ appointments. Yuck. First we have follow-up with the radiation oncologist which is no big deal. Then a chest CT, which he gets every three months to check for possible cancer in his lungs. After that, an abdominal ultrasound to check for cancer in his kidney. Then it’s vascular mapping, a procedure done for the surgeon who would eventually place a dialysis catheter, if and when such a thing becomes necessary. This is not pending, as you know, but in the case of either new growth (cancer) or worsening kidney function, we might need to move quickly to remove the kidney and start dialysis. This mapping of Austin’s veins will help the surgeon decide whether to place a fistula or graft, which really means nothing to you (or even us) until it happens.
And finally we end our day by visiting the out-patient oncology clinic for a check-up and labs. My big worry (well, besides the big worry) is that he lost so much blood last week that he’ll need his next transfusion sooner than we’d expected. I’m just hoping it’s not next week because the boys are headed back to camp and I’m planning to complete (I mean, start) all the organizing, filing, unpacking, and cleaning that I’ve had all summer to do.
It never does slow down . . .
Austin’s appointment this afternoon with the orthopaedic surgeon went well. We soaked his hand in sterile water and peroxide until we could peel the bandages off and the doctor was quite pleased with how it looked. He could tell right away from the way Austin was holding his fingers that there was no nerve damage (phew) and said the skin tone looked good and pink which meant it was already reconnecting (phew again). Austin, yet again, has ended up extremely lucky in his own extremely unlucky way.
Stitches can be removed in a week, although the doctor did caution that the nylon kind used in the ER will be painful to remove. Not awful, but at least a pinch which will certainly get tiresome when there are 42 of them. He even said he was going to call the ER to tell them not to use that type with kids anymore.
By the way, you’ve gotta click directly on the photo below to see up close the full extent of damage.
Thanks for all your comments, both here and on Facebook, which fully convey the horror and commiseration that such a story deserves. I heard from at least three separate people who said they read it out loud to a group to much gasping and groaning. We too felt horrified as we watched this all unfold and were weighed down by a deep sense of the injustice of it. Especially because it had happened on Austin’s requested outing, his special celebration, the thing he’d been awaiting for so long.
But at the same time, Mark and I were both slightly relieved (only slightly) that it was Austin forced to endure this and not Braedan. Braedan is marvelous in many ways, but tolerance for pain is not one of them. He has, however, encouraged all of us to eat (and color) with our left hands until Austin regains use of his right (coloring is easier than eating). Another grand and mature display of brotherly affection between the endless bickering.
And I agree that at least this falls within the range of “normal” little boy accidents but I also agree that we should be exempt from such things. In fact, I hereby apply for our official exemption and can write a powerful and convincing essay to the universe describing exactly why my family should no longer be subjected to such “ordinary” calamities as broken arms and bicycle accidents, and most especially not such major calamities as teenage car wrecks or middle-aged heart attacks.
Now I know (oh, do I ever) that suffering is not evenly distributed but I do indeed think we’ve had enough.