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My mom liked when I used that phrase the other day and suggested it might be a good title for the book (whenever I get around to reconfiguring it). It does seem to be fitting. A little too fitting, if you ask me.
We went in this morning for platelets, thinking we’d be there for two hours, which was about all we could stand as summer was blooming outside the window before us. But his blood pressure was high, after a few weeks of holding steady in the only-slightly-high range. Soooo. . . . whaddya know, they decided to send us over to the in-patient floor for overnight “observation.” I convinced them to let us go home first since I hadn’t packed so much as a lunch and there’s little for Austin to eat in the cafeteria (the only low-sodium options are things like bananas and yogurt, both banned from his diet).
So we quickly came home, soaked up the sunlight as we ate lunch on the back steps, and packed a bag for our “sleepover.” Austin was extremely pragmatic: “Oh, only one night? That’s not so bad.” Huh, yeah, except it’s one night we weren’t supposed to be there.
But be there we are. Hopefully truly just this one night. They’re adding another blood pressure medicine to his daily repertoire and want to make sure his creatinine doesn’t creep up too high. Oh, this tight rope we walk: medicines that bring things up and knock things down, doing good and bad all at once.
All while we’re stuck watching life from the wrong side of the window.
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!
It’s not all doom and gloom around here, folks. We’ve had a great week. Austin went to school every day (well, his school is only Monday, Tuesday and Wednesday, but it’s been a while since he’s done even that “full week”). And not a tear out of him. But many many smiles. Especially on Wednesday when Daddy was the parent helper (always an extra special event and even more so for Austin). I received several messages from other parents telling me how he was simply radiating joy on that day. But I didn’t need those messages because I knew he would be.
Then yesterday, we had Braedan’s school concert “Bugz,” a song and dance production put on by the three kindergarten classes. He had a speaking part (two lines) which he beautifully and clearly enunciated into the microphone (without wandering off during the last few words like many of his fellow classmates did).
Austin and I had gone to the clinic for labs in the morning and discovered (shocking!) that he needed platelets again. When our nurse placed the order, the blood bank informed her it would take two hours to “spin them down” to the right volume, even though it had only taken one hour to do the same thing on Monday. That one extra hour would have made us late for the all-important play (totally unacceptable) so we arranged to come back as soon as it was over.
Well, right in the middle of the second song, I got a text message from our nurse saying the platelets had arrived and were going to expire in less than an hour! So, as soon as Braedan said his line, my mom whisked Austin off to the hospital for his transfusion. Thank god for text messaging because I would never have answered a phone call at that moment and then we surely would’ve ended up spending the night.
But all was well and Braedan was beaming with pride the rest of the afternoon and evening. We rode our bikes out to dinner for his best pal Lola’s birthday — our first restaurant excursion since Austin’s new diet restrictions. Well, you gotta live so he had a Tums followed by a grilled cheese sandwich and perhaps this picture can give you some clue as to how he felt about that:
The kids were all delighted with the summer-like weather and with how very brilliant and funny they find themselves and each other. Good day, good week. And we carry on.
With Lola and Olive at the Colony.
It just doesn’t get much better than this.
Wow, well, that was quite a typo, huh? As I think was obvious, the last lines of my previous post were supposed to read (and now do read), “I do NOT want to be like them.” I am going to quickly breeze over that so as not to make myself too superstitious and nervous about possible hidden meanings.
Anyhoo, Austin needed platelets again today (of course, why are we surprised?), but that came after a lovely morning at school. He didn’t even cry when I left him, which is a rarity. It’s been a struggle to fully acclimate him to preschool since every time he gets into a groove there, he’s pulled out again for a three week “vacation.” So today was good and he’s due there the next two days as well.
We were bummed about the platelets but pleased with his much more reasonable blood pressure numbers, even after his transfusion. Maybe the medication is finally at the right dose and doing its job. While waiting for his platelets to arrive from the blood bank, we spent a sunny if chilly hour outside engaged in our favorite activity: construction gazing.
We’re not expected back at the clinic until Thursday morning, a full two days off. Well, two days off for him. Mark and I are planning to meet — sans children — with our oncologist and nephrologist tomorrow to try to flesh out the next steps in Austin’s treatment. We are hopeful that we’ll get enough clear information that we can make a decision we feel solidly comfortable with. We know, however, that answers to most of our questions simply don’t exist and we’ll therefore have to choose among the lesser of evils.
While Mark and I think differently and come to our decisions via different routes, we both fully understand and respect each other’s decision-making process. We also know what each of our weaknesses are, such as that part of me wants to stop chemo simply because I am sick and tired of chemo. I recognize that and Mark recognizes that and we will do our best to not let such (expected but selfish) feelings influence our ultimate decision.
In my mind, this is a choice between an almost certain bad thing happening if we continue (kidney failure) versus a maybe (?) remote terrible thing happening if we don’t (cancer returning or, worse, spreading). Not to mention the numerous other bad things that can happen as a result of continuing (bone marrow depletion leading to bone marrow transplant, secondary cancers down the road, fatal infections of the central line, etc). We don’t need to make any decision for a while because he still has another round next week from which recovery is bound to be long and torturous (same chemo as this last time — just piling it on).
Neither option is perfect, neither road a smooth one to travel. Both are fraught with danger, sometimes obvious, sometimes hiding around the bend. No matter what we choose we’ll be taking a huge risk. But we will be cautious and we will be wise. And I hope hope hope we will be right.
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!
He needed platelets again yesterday. And again today.
His body just can’t keep hold of them. I don’t really understand the science behind it but something about his antigens “chewing them up.” Yesterday was actually our “quick” day as it lasted only four-and-a-half hours and we were out in time to pick up Braedan. Today took longer because about thirty minutes after his transfusion, he broke out in hives. An allergic reaction to some of the antibodies in his donor platelets, not terribly uncommon but concerning nonetheless. So, a quick dose of Benadryl through his line and a sudden nap and we were released shortly after 5.
Braedan is so completely easy-going that he is thrilled with whomever picks him up from school, however unexpected, and he had a great afternoon jumping on the trampoline of our friends. That definitely makes things easier. Plus the fact that everyone seems to enjoy having him over — he’s not one of those kids whose favorite activity is “dumping” (you know, dumping containers of toys onto the floor but never playing with any of them). He’s endlessly chatty and adores grown-ups, so I don’t feel too guilty for foisting him on people at the last minute.
We’re due back in the clinic in the morning and expect to have to go in over the weekend too for at least blood counts if not transfusions, which means briefly checking into the in-patient floor since the clinic is closed.
Nothing brilliant to say right now except I. Am. Tired.
Isn’t there a movie where some guy says with a funny accent, “For you, dahling, never a quickie. Always a longie”? That’s sort of how my life feels and I’m not talking dirty here.
I brought Braedan along for Austin’s “quick” lab work yesterday, thinking we’d be in and out in an hour and still have time for a last-day-of-Spring-Break playground visit. We arrived in the clinic at 1 . . . and Mark finally met us at 6:30 so I could take Braedan home for dinner. After another switch-over two hours later so I could spend the night, Austin was released from the hospital at 2:30 this afternoon. How’s that for a quickie?
He needed platelets, again, even though he’d gotten them on Friday. And then needed a Doppler ultrasound to check the blood flow through his arms and fingers because his hands looked purple. And then we couldn’t get his blood pressure to drop to its already elevated “normal” range. . . and because the combination of low platelets and high blood pressure can cause bleeding in his brain, we were admitted. We did eventually use enough medications that his blood pressure lowered around 10 and then we were simply “observed” through morning, at which point he needed another platelet transfusion. Huh.
The two boys were not at all fazed by their hospital day though as yesterday they tore around the halls and played games that involved lots of squealing. So it was mostly okay. But of course, everyone’s patience was tested after all those hours and when Braedan started listing in a whiny voice the food he was planning to eat for dinner in the hospital cafeteria, including Austin’s favorite forbidden fruits corn dogs and yogurt, my protective motherly instincts kicked into gear and none of those instincts were aimed at protecting Braedan. I let loose a vicious string of attacks at him, including the words “torturous” and “cruel.” I think maybe steam was coming out of my ears.
Not my best moment. When he later asked me what “cruel” meant, I knew I had gone too far and explained carefully and calmly how much it upsets Austin (and me) to hear about all the things he’s not allowed to have. We talked for a good long while and I felt fortunate that kids are so quick to forgive.
And after we drop Braedan at school tomorrow morning . . . Austin and I will head right back to the clinic for yet another transfusion of platelets. Oh boy.
No final results from the ultrasound yet. That’s not necessarily a bad thing. Our oncologist wants to review “post-operative changes” with the surgeon. Of course, this kind of vague waiting makes me nervous, but if I step back and think of it from an objective perspective, I know that what remains of Austin’s kidney does not look normal and never has. It surely looks even less normal after December’s surgery, so I think the doctors are just being cautious and are consulting with each other before making any final proclamation.
So, we’ll just let that be for now (what else can we do, after all?) . . .
In other news, his platelets have risen significantly, almost to the minimum level required to start chemo. We assume that they’ll continue their ascent and are planning to check in to the hospital Thursday morning to stay through Tuesday for the next round. When next week’s over, he’ll have completed three of his six rounds of chemo (assuming–and hoping!–that we stop after 18 weeks and not the full 30), so that feels good.
And in the meantime, Austin will go to school tomorrow and Wednesday, and have two spectacular days in a row. Lucky boy.
I lost my voice. Both literally and figuratively. We’ve had no phone or Internet access until today, six days into living here. And blogging from my cell phone is a drag (too much SHOUTING). So, my “voice” has been temporarily silenced.
Plus then, I lost my voice, due probably to sheer exhaustion. Woke up Thursday morning unable to talk, my already raspy voice about ten notches down on the raspy scale.
But, here I am, blogging from my new home office, with so much to say.
The house, first of all, is fabulous. We are absolutely loving it. Of course, we’re still maneuvering around boxes and still opening three drawers before we find the one with spoons in it, but each day, we’re feeling more and more settled and are all very happy here. Mark and I have been thoroughly impressed with how well the boys handled this transition, how independently they’re playing in their new playroom, how they’re sleeping in their own rooms (well, Braedan is, and Austin at least starts in his room, but a rousing game of “musical beds” is nothing new in our family).
We love how we’ve decided to configure our space and it all feels surprisingly cozy, despite the larger size. I do promise pictures in the next week or so, but right now there’s still too much clutter for you to be able to appreciate anything anyway.
And Austin is doing great. He recovered quickly from his feverish stay in the hospital and has been racing around like his regular old self. His platelets are low (a common side effect of chemo), so we had three clinic visits for labs last week, but aside from a directive against “rough play” (yeah, right), all has been normal, including the rest of his blood counts. So normal, in fact, that he went to school last Wednesday and had not just “a day” but a spectacular day, according to his teachers.
Because his platelet count is low, he’s not supposed to take his blood thinner and because his other counts are normal, he hasn’t needed his Neupogen, so he’s had no shots at all for the past several days. This coupled with the fact that he’s allowed to be around other kids has made it feel like an enormous break from cancer. Like he’s a totally fine kid with no hair who has to take a few extra oral meds each day. It’s really quite lovely. Oh, but he does have an ear infection! He had a truly rough night on Thursday with much complaining and crying and ear tugging, and sure enough, at clinic on Friday, he was diagnosed with a double ear infection. But as any mom who’s witnessed the amazing efficacy of Amoxicillan knows, this is an easy one.
We were scheduled to go back in the hospital this coming Monday for five days of chemo, which is being postponed due to his platelet count. We have labs again Monday morning and if his counts have risen, we might reschedule for Thursday. Or it could be delayed until the following Monday. Not knowing is hard in the practical sense, as I have friends trying to coordinate our meals and playdates, but I’m also willing to take each extra night here (somehow I thought I’d be much farther along in my unpacking by now. . . ?). Plus I’d love to send Austin back to school Tuesday and Wednesday next week. I will certainly keep you all posted.
For now, you can rest easy knowing that all is well in the Gallagher household.