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You’re not really gonna believe this one.

Back in the winter, during those long dark days spent cooped up in the hospital, Austin announced that when his PICC line was removed he wanted to go to Kalahari. No, not Africa; the “world’s largest indoor water park” located about an hour west of us. We’ve been for each of the past two summers with Mark’s family and so again planned a Gallagher outing for this week.

We arrived Tuesday afternoon and the boys quickly immersed themselves in the relatively small outdoor water slides (Braedan not being brave enough and Austin not tall enough for the more serious slides inside). After two hours of watching them climb up the steps and zoom down the slide, emerging from the tunnel with shouts of “Again! Again!,” Mark and I stood in the ten inch deep water with beers in our hands and commented on how lucky (again) we were to be there. “This is Austin’s victory parade,” we said as he whizzed past us for one more trip down the slide.

Then we dragged them back to the room for some dinner and were sitting out on the balcony looking over the restaurant options. I, of course, was most concerned with keeping Austin hydrated and had poured each boy a full glass of cranberry juice in the only glasses I could find which were, well, glass. And then Austin tripped, on something invisible, and fell forward on the concrete balcony floor, without thinking to release his grip on that drinking glass.

My initial reaction was annoyance that he had broken a glass, until I glanced up into Mark’s usually calm face and saw that something was definitely not right. I scrambled over the chairs to avoid the shards of glass, grabbed a bath towel and, as I quickly wrapped it around Austin’s hand, my heart sank. This was no small scrape, no minor abrasion easily remedied with a BandAid and Neosporin. No, no, his right ring finger was sliced (“filleted” the doctor later said) from base to tip, down to what appeared to be bone, skin dangling precariously from the top. And blood everywhere.

Here we go again.

I held my poor screaming child in my arms and tried to slow the flood of red seeping through towel after towel, while Mark called guest services to request medical attention. Finally, the EMT, whose job usually consists of swimming accidents, arrived and removed the towel (ouch) to briefly reveal this horribly mangled finger, not really looking like a  finger at all. He managed to wrap it tightly enough to stop the bleeding and called an ambulance, our first ride ever, to take us to the local hospital.

Austin was a trooper, laying back on that stretcher and looking in quiet wonder at the inside of a vehicle revered in the imaginations of young boys everywhere. And you should have seen the look on everyone’s faces, first the EMT, then the ambulance team, and finally the nurses and doctors in the ER of Firelands Regional Medical Center, when they asked, “Other than this incident, is he fine and healthy?” “Weeeeellllllll, . . .”

So, anyway, Mark met us at the hospital where Austin received a whooping 42 stitches in his right hand. Forty-two! Mostly on the ring finger, but also his pinkie and three on his palm. It was a long and tough process, with necessary but painful shots of Novocaine administered with a seriously huge needle right where he was most tender. It kept wearing off, prompting sudden and loud screams from a mostly calm Austin, then followed by additional shots followed by additional screams.

Mark and I found ourselves in a strangely familiar situation, hovering over Austin, singing in his ear, trying to distract and amuse while he lay on a hospital bed having terrible things done to him by strangers, all the while hushing him and sweetly reassuring him that this was for his own good. It was sadly typical for the three of us, a dance we know the moves to all too well.

But we made it, yet again. Mark and I were both wowed by the clean and calm atmosphere of the emergency room, quite a bit different from our own city hospital. We were back at the resort shortly after 10 to retrieve Braedan who had happily gone to dinner with his grandparents and, in a display of true brotherly affection, had saved half a grilled cheese for a very hungry Austin.  Thanks to a dose of Tylenol with codeine, both boys were asleep by 11, leaving Mark and I to sit on stools at the kitchenette counter with wine and room-service pizza.

Of course, Austin was instructed not to get his hand wet, which is something of a bummer when you’re at a water park. The EMT had met us upon our return with plastic cups, an enormous stuffed tiger and two credit cards loaded with tokens for the game room. So Wednesday morning we awoke with plans to play indoors all day and maybe take a trip to the nearby wildlife safari. And then I got a phone call from the resort’s retail manager who said she’d read a report on “the incident” and had a new waterproof glove designed by an orthopedic surgeon to use over casts. She hand-delivered it to our room and I was floored to discover that the same company also makes water-proof PICC line covers! Huh, just what I’d been searching for. Anyway, the blue rubber mitten was too big for Austin but we jimmy-rigged it with some tape and back to the pool he went.

We did of course spend an extraordinary amount of time in the game room winning all sorts of junk toys, including the newly coveted whoopee cushion which Austin has lovingly dubbed the “toot balloon.”

All in all, it ended up fine. He had his victory parade, interrupted by a little trip to the emergency room and 42 stitches. Tomorrow we see a local hand specialist to make sure there is no nerve damage. Stitches should come out in two weeks’ time and hopefully he’ll be as good as new. Mark’s pleased because he thinks this will be a good time to turn Austin into a lefty. You know . . . for his future as a professional baseball player. That was typed with a large dose of sarcasm although I suppose nothing about this kid could possibly surprise us, right?

WordPress just added a “Like” button to their posts. And there couldn’t have been a better time.

We’ve learned to celebrate small victories along this journey. Because sometimes small victories are all we’ve got.  But today was a pretty big victory.

The removal of that PICC line signifies the end of cancer treatment. The end for now and perhaps, we hope, the end of cancer treatment forever. I told Austin, as we finally walked out of the hospital at ten past six this evening, that I hope he never ever needs chemotherapy again in his entire (long, long) life.

The PICC line last week

It was a complicated day, not without its hiccups, such as at ten this morning when I got a phone call from Fairfax saying Braedan was in the nurse’s office with a tummy ache. Luckily my mom had taken Austin to the clinic and I was able to pick up Braedan (who seemed miraculously fine as the day went on) and secure a babysitter all before I was due there at lunchtime.

When I showed up and told Austin I was there for the “long shift,” he reminded me that I was there “for the happy time too!”  I had told him earlier that we were “sort of done” after today. He asked for clarification a couple of times and I said that he was done with chemo and done with sleepovers and done with his PICC line and, aside from some blood draws, mostly done with cancer. And he asked, “Done done?” And I (hemming and hawing) said, yes for now, but that we would have to start again in a little bit to take care of the kidney (he knows all about dialysis already; he refers to it as “the four hour thing”) but that for now, we would be done. To which he replied, “Super-done?”

For us, yeah . . . I guess this counts as super-done.

So we waited through hour after hour of blood, followed by an extra IV antibiotic to clear up a lingering ear infection and finally, finally, as everyone (staff included) was itching to go home, the woman from IV team showed up to pull the line.

It was no big deal; Austin said he couldn’t feel a thing although he sat nervously in my arms chewing on his shirt while it happened. And then it was done and everyone clapped for us and we went on our way.

Whoosh, just like that.

Nothing but a band-aid

And then tonight, after a few meltdowns on the part of both boys, we drove over to my parents’ house and did just what we’ve been waiting to do:

You can click on these pictures to make them bigger (if you really want to see Mark’s spectacular golf tan)

They are now sleeping soundly (nothing like swimming to get your kids to sleep through the night) and we’ll go back again tomorrow. Because for now, for today, we are indeed super done. And that is definitely worth celebrating.

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 know, you’ve been waiting for some big revelation or major announcement after yesterday’s meeting. Well, we’re mulling. No decision yet. Although I will tell you that both of us walked in there leaning towards stopping chemo and both of us walked out leaning towards continuing.

It’s not what we want, of course. More than anything we want to do next week’s chemo and then celebrate being done, empty that marble jar and throw a little party. We want to enjoy our summer free from medicine and hospital stays and transfusions and PICC lines that can’t get wet. We want to pat ourselves on the back, and feel accomplished and confident that we did everything we needed to.

But if we stop now, it would feel more like quitting and I think we’d just be nervous, more nervous than we will be anyway, that what we did just wasn’t enough.

The data supports continuing on with one more twelve-week cycle. Of course, there’s no one quite like Austin in any of the studies, but most children with relapsed Wilms do at least two cycles and the protocol, as you know, recommends six of them. We know we’re not doing six, there’s no way, or even five or four or three. But two seems reasonable and doable, as awful as it may be.

Austin’s nephrologist basically told us to leave the kidney out of the equation. Which is hard to do since that poor little beat-up kidney is at the forefront of almost every decision I make. She said there’s no way for them (or certainly us!) to accurately predict how long it will last or what it will take for it to either recover or wither away. She believes that the “amazing recovery” it showed after December’s surgery was probably a honeymoon period and the recent deterioration is more likely due to surgical trauma (and maybe radiation) than to chemo anyway. It could be finding its new set point and then just sit there, for years even, just chugging along. Or not. But, according to her, chemo will not be to blame either way. She reiterated, in a less direct way, what we’ve heard many times from Austin’s oncologist: that there’s no point in having a kidney without a kid to use it.

A harsh truth, but a truth nonetheless.

Of course, the other truth is that we may have no say in this either way. If Austin’s bone marrow is indeed depleting, as his recent platelet troubles would indicate, we may have to stop chemo anyway.  If recovery between doses takes more than six weeks, then chemo is rendered much less effective and treatment is often halted. We’re not there yet, and may never be, but it is indeed a possibility.

So, we will continue mulling. There’s no rush, no deadline for deciding. We’re awaiting some more detailed numbers from one of the protocol’s authors (the Wilms tumor guru at St. Jude’s we’ve been consulting with all along) with specific outcomes for kids depending on the number of cycles they completed. The plan has shifted and changed many times already and no doubt it will shift and change many times before we’re through.

But for right now, at this moment, it looks like we’re halfway there. Fifteen weeks done out of thirty. Huh. It’s been a long slog already. I’m sorta feeling my glass half empty right now.

Tuesday is Early Day. Braedan gets let out of school a full hour earlier on Tuesdays than any other day of the week, as that time is designated for teacher collaboration and professional development.  This small fact was the driving force behind everything I did today and even back into last night.

The surgery went well; they were able to replace the PICC line safely and without complication. It lasted just more than an hour and then Austin was back in my arms, safe and sound and extremely grouchy. He spent the rest of the evening in a tizzy, devouring the one string cheese I’d brought from home and then refusing all other nourishment, crying off and on for no clear reason. The only thing to soothe him was my voice singing lullabyes in his ear, which is sort of ironic if you’ve ever heard me sing!

The night was long since he didn’t start chemo until well after midnight. This didn’t impact him much except for hourly diaper checks and the noise of his IV machine beeping each time one particular drug had finished and another one was due, but it impacted me quite a bit.

I had made clear to many people the night before that I planned to pick Braedan up from school at 2:05. Could I have arranged for him to go home with someone else? Certainly. That wouldn’t have taken more than a quick phone call or text message. But that’s not the point. The point is that I’d told him we would be there. And I’d already told him we would be home the night before, so there are only so many promises you can make and break to your six-year-old child before you start to damage his psyche. He needed to trust me and I needed to be there.

So, throughout the night I kept waking from my fitful sleep to see if Austin had started his scheduled blood transfusion, which I feared might hold us up. And each time, I fell back asleep anxiously readjusting the hours in my mind that we had left until we’d be released.

Then morning came and the three-hour transfusion still hadn’t started for a while host of reasons — all perfectly good ones but none that had been shared with me when I’d asked multiple people about the schedule the day before. One medication had to be administered a set number of hours after the last chemo drug but also after the set number of hours of post-hydration, none of which could be administered at the same time as his blood transfusion, etcetera, etcetera, etcetera. And then suddenly, they decided he needed an abdominal ultrasound to take a “quick” look at his kidney to make sure the blood in his urine was indeed the fault of the chemo and not some other more alarming change in that most sacred organ.

“Fine,” I said, “But I have to be home to pick up my son.” Yes, yes, yes, everyone assured me I would be. Our nurse made phone calls, demanded schedule changes, assigned someone the special duty of walking us down to the basement for the ultrasound so we didn’t have to wait for “transport” to escort us (slowly).  Said nurse promptly got bad-mouthed by the woman in the basement whose schedule was changed to accommodate us.

Rush here, rush there. The ultrasound was good, better than good even. I haven’t seen the full report but the doctor used phrases like “normal kidney tissue” and “an improvement over the last images,” so that was music to my ears. But my ears didn’t matter; my eyes were on the clock. Finally, we were back in our room, with that bag of dark red fluid dripping into Austin’s brand new PICC line. The bags were packed and the car was loaded and we were almost almost there.

The transfusion finished at 1:30, just in the nick of time, and as our nurse unhooked Austin to send us on our merry way, he coughed. A big nasty, slightly wet cough. “Is that new?” she asked.  “Yeah, just in the past few days,” I said, immediately wondering why I hadn’t lied. She just wanted to listen and then have a doctor listen just in case, just in case, just to be sure that they hadn’t pumped his poor puffy body so full of fluids that some had seeped into his lungs.

This nurse is one of our favorites: we adore her and she adores us and she’d already gotten chewed out for trying to ensure I would pick my big boy up on time.  I just stood silently by, in my coat with my hands on the stroller, and watched as she and the doctor had to take off Austin’s coat and listen, just one more time, just one more time, to his breathing.

But . . . all was well. We zoomed out the door and made it home in time to drop off the car, find our spring coats and walk down the street to be standing casually in the sun as Braedan dashed out the door. The rest of the afternoon was spent maneuvering around the mounds of slush on the school playground and then digging the boys’ bikes out of the garage. Once I located both helmets, they carefully steered a clear path through the snow to go riding down the street.

And again, we made it. On Early Day and all.

I was all set to post an update telling you how smoothly everything has gone.  What a happy little ball of energy Austin has been for the past two days: racing up and down the hallways, flinging Play-doh balls around the room, flirting with the nurses.  I was all set to tell you how we’d arranged for chemo to be delivered today at noon allowing us to head home by 8:30 and get a totally normal night’s sleep in our own beds.

Except . . . (oh, that ever-present except!) except that he has a crack in his PICC line. A little break where the plastic tube meets the screwed-on tip that connects to IV lines. It’s not terribly unusual. It happens. And so, of course, it happens to Austin. Because, while he handles the big things (major doses of toxic chemo) like they’re nothing, he always gets downed by the little things.

Soooooo, what to do? Well, that’s what we spent hours this morning trying to figure out, literally hours of back and forth and one plan and another plan. He needs surgery to replace it, a minor procedure for most but remember how they struggled with placing this line the first time. They will run the new one through the current one so hopefully those old issues won’t come into play. The issues that did come into play this morning were the last-minute coordination of the schedules of all the various doctors from all the various departments who need to be present for this thing to be successful and the unfortunately significant fact that Austin ate two grapes (two grapes!) this morning as breakfast, pushing off any potential opening in the surgical schedule for another eight hours.

So finally, we have a plan and I see no reason we can’t stick with it. (Aaaaahhhh, famous last words.)  He will have his procedure at 6pm tonight and should be ready to start chemo through his new line by 8 or 9. With six hours of post-hydration plus his various IV medications, we’ll be ready to go first thing tomorrow.

It’s not the end of the world, of course. We’ll make it through this like we make it through everything else. But he hasn’t had anything to eat or drink (save those extremely satisfying two grapes) since 8 o’clock last night, so it’s bound to be a long and grumpy day. He’s napping now and when he awakes, he’ll need a peripheral IV placed in his hand for maintenance fluids and later for anesthesia.

And then tomorrow (oh, how I long for tomorrow), a nice long trip to the playground in this glorious early spring sunshine.  And we keep on keepin’ on.

You should’ve seen me trying to put Austin down to sleep last night while he kept insisting, “We are NOT sleeping at the hospital!” It was after ten when he finally conked out only to be roused a few hours later and whisked off into the cold dark night. But he happily watched the empty streets pass by as we drove home at 1:15 am and quickly crawled into our own beds. There is something to be said for waking up in your house with your family all around you.

And after some moments of blissful normalcy this morning, I went to flush his PICC line . . . and it was blocked. Oh, I was so mad. SO mad. It is the worst feeling to sit there and attempt a necessary medical procedure on your child only to have it fail.  I tried a couple of times, afraid to push too hard; was able to draw blood off of it but only with a lot of resistance and air bubbles. Right as I was fuming about what to do next, the charge nurse from the floor called to see how everything was going. “Weeeellllll,” I began and she said, “Oh no.”

So we spent the next several hours down in the clinic, the absolute last place we wanted to be, waiting for the “central line Draino” to work its magic. Which it did, of course. And then, back home, finally home.

Speaking of performing medical procedures on your own child, his injections are becoming quite a production. He is fighting them tooth and nail, and has to be pinned down by me while Mark attacks him with that needle. It’s all sort of ridiculous and would almost be funny if it weren’t so awful. We’ve tried all the tricks recommended by professionals — have given him options (which leg, where we sit to do them), we’ve given him needles to stick into stuffed animals, and have explained over and over that we don’t want to hurt him but have to do this to make him better. But nothing works. He simply will not have it. And because he is squirming and tensing up his muscles, the damn shots hurt all the more.

Ah, how many more marbles indeed?

Did I mention that this is exhausting?

Austin has been extremely feisty today and feisty is a bit of a euphemism. He is full of anger and bluster at being “hooked up” to his IV and insists over and over at the highest volumes that we unhook him.

Last night, when he’d finished his chemo and was about to be switched back to his fluids, the nurse granted permission for him to “run a lap” unhooked. Of course, as soon as Austin had the promise of one lap, he insisted upon two and then requested “five hundred,” which is his go-to number for everything (as in “500 more minutes,” “500 more days” and “500 more cookies”). His lap, which is literally a lap from our room down the hall and around the nurse’s station, was a joy to watch. As was the lap after that and the one after that. His running was interspersed with  skipping and jumping, his hands held high in an Olympic-worthy victory stance, prompting several of us bystanders to say (with due irony), “Wow, can I have some of what he’s having?”

But all good things must come to an end and I eventually had to scoop him up and return him to his room and his dreaded IV pole. This child did not give up his freedom without a fight. A kicking, screaming, hair-pulling fight. He then tried to unscrew his PICC line from the IV himself, not exactly the safest thing for a three-year old to do.

He is just mad, sick and tired of being restrained, tied down, shackled to this damn disease. He feels good and he wants to run free, not be forced to wait for Mommy to maneuver the pole over the door jamb or need to untwist three times in order to reach his desired toy.

The scene was replayed today, both with me and with Mark. Again involving kicking and screaming and, this time, biting. Neither of us begrudge him his anger. He should be angry. This sucks, what’s happening to him. And yet we continue to hold him down and calm and quiet and soothe so we can stick him with another needle or pump his body full of another poison.

We are all sick of being shackled to this disease.

Sorry to leave you all hanging on such a bad post back there. These past few days have certainly been a series of ups and downs. We are home, released first thing on Thursday morning. Austin’s spunky self has re-emerged, he’s jumping on the mini-trampoline and playing rocket blasters with his brother (with whom he is miraculously getting along — maybe absence makes the heart grow fonder?). He’s been completely happy and seems mostly normal, despite the fact that he isn’t eating much.

We’ve gotten the hang of the PICC line, especially now that it’s covered with the “tube” part of one of Mark’s athletic socks (an “arm bra”). Yesterday we went to the clinic for labs and a dressing change which was a fairly miserable experience because the tape they’d used in surgery was much stickier than the regular one and took ten minutes to slowly and painfully peal away from his already sore arm. Then, late last night, I went to flush the line and couldn’t do it. It was stuck, nothing going through, total resistance. You’re not supposed to push too hard when this happens in case there’s a clot that you don’t want to push further into the blood stream. It was the middle of the night at this point and I figured there was nothing to do until morning, but I tossed and turned for hours convinced this PICC line wasn’t working either. Imagining my Saturday in the ER, with twelve different doctors trying to figure out what to do with this kid who clearly needs a central line and clearly rejects every one of them.

I tried to flush it this morning, again to no avail. Called the attending oncologist, who didn’t sound too alarmed and told me to call our Home Care nurse. Well, I’d spoken to this woman yesterday when she called to schedule a weekly visit to change his dressing. I told her we’d be in the clinic each week and they could do it there, so after making sure I felt comfortable with the flushes she said, “So, it sounds like you don’t need me?” “No, I guess not,” I answered, never guessing I’d need her less than twenty-four hours later. When I called her today, she listened to our predicament, and then apologized for having canceled us as her patients! Oh great. She said she could reinstate us on Monday and wished me luck (thanks a lot).

So there I was, mentally preparing for an ER visit (not exactly the place you want to bring an immuno-compromised child) when I decided to call our old nurse practitioner, a long time friend and my go-to for advice. She calmed me down, urging me to avoid the ER at all costs, and walked me through some options, one of which worked beautifully . . . and the line flushed! All was suddenly well and every minute of this almost-awful day now feels like a gift.

And the shots — oh, this kid is a trooper. On Thursday night, he screamed and cried so hard that I cried, just furious that, on top of everything else he has to go through and everything else we have to go through, now we have to add this twice daily bit of pain and suffering. But by Friday morning, he barely let out a peep. And the three shots he’s had since then have been a piece of cake. He climbs into my lap, making sure Braedan is nearby with a distracting toy, and Mark pops that needle in his skinny little leg and it’s over. “One and done,” is Daddy’s motto.

I’m totally wowed by him, by his ability to just adapt and take it and make it all okay. By his truly incredible resilience and his endless supply of strength. By the smile and the laugh and the jump that inevitably come after the shot and the prick and the poke. He keeps going and that lets us keep going. He guides us through this with a three-year old’s sense of possibility and hope and joy.

How lucky are we?

Long day. Ugh, another long day. Since I don’t have the energy for drama and good story-telling right now, let me cut to the chase and tell you that he has a PICC line after a serious and sustained effort at replacing the Mediport.

He was in surgery for four hours, not quite the “quickie” we’d been hoping for. They attempted to rewire the Mediport, but ran into the same problems the docs had had the first time. Turns out our dear little Austin has a rather unusual vascular system. Really, like this should surprise anyone. Where the rest of us have veins that run straight across our chest, his are a series of zigzags and peaks and valleys. They reexamined his past ECHOs, EKGs and cardio-ultrasounds and determined that this isn’t actually a problem (just Austin’s “unique anatomy”), except when placing a central line. Too bad he’s needed several of them.

They were ultimately able to place a PICC line that dangles out near his left inner elbow and runs up his arm into his chest. Even the PICC line was a relief because that didn’t work the first few tries either and they were actually considering running one through the femoral vein in his thigh. I was seriously disappointed when I walked into the recovery room and saw that bandage on his arm but we’ve already begun to adapt to it and I think it’ll be okay. It can’t get wet so baths will be tricky, involving Press n Seal and lots of tape, but we’ll manage. We also need to flush it with Heparin every eight hours, which will surely cause some scheduling chaos (sleep-time lasts longer that eight hours after all), but again we’ll manage. As long as the damn thing works . . .

He’s still in the hospital tonight, this time with Mark, but is set to be released first thing in the morning. One of the hardest things about the constant changes in our schedule is what it means to Braedan, who clings to the given date and blames us when it changes: “You said you’d be home tonight! Why do you always tell me you’ll be home and then not come home?” So over and over again, I tell him that we don’t like this either and we all have to be flexible and do the best we can. But when you’re six and just starting school, you learn to follow rules, to do what you say you’re gonna do, and you expect everyone else to also.

And poor Austin. He has just been through the ringer. He was feisty all day today. Woke up happy after a great night’s sleep but was then most disappointed not to be allowed to eat and spent a good chunk of the morning screaming for a grilled cheese sandwich as if maybe I just hadn’t heard him the first time. He came out of surgery in an angry fog, and only let up to scarf down two grilled cheeses in a row. As I sat on his bed being trained on how to care for his new line, he was just furious that I wasn’t devoting every second of my attention to him and started throwing his toys at me, including a matchbox car that hit me square in the face.

It has to be extremely confusing for him to have the people he loves and trusts the most inflicting pain on him, or watching as other people inflict pain on him without doing anything to stop it. We’re constantly telling him this is for his own good, “to help make you all better,” but he never felt sick in the first place, so he’s got to be thinking, “All better from what?”  Cancer is a completely vague concept to him, some invisible evil we talk about and fight against but without him ever understanding why.

Maybe that’s the crux of it right there: maybe none of us understand why.

August 2020


August 2020