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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!
I’m taking a much-needed break after several hours of hard digging in my yard, so I figured I’d tell you about the conversation I had with the boys last night. The three of us were lying in bed in the dark, having just finished our bedtime stories (the very best time for talking), when Austin asked, “Why do boys and girls get cancer?”
He’s never asked a question like this before, nothing even close. If he talks about cancer at all, it’s usually to ask about specifics: “When are we going to the hospital?” “Who will be our nurse?” “How many nights are we sleeping over?” For the most part, I think he just assumes cancer is a regular part of everyone’s life and is no more likely to wonder why it exists than he is wonder why we eat food each day.
So I saw this as a great opportunity and launched into my weeds-in-the-garden analogy. I didn’t make this one up, in fact I think Kelly Corrigan used it with her daughters in The Middle Place, but I have managed to add some extra layers to it. This was how I explained cancer to Braedan’s class a few months ago when I visited at his request. (That afternoon quickly morphed into a discussion of gardening, with twenty eager little hands waving in the air to tell me about their experiences with weeds.)
Cancer is like a weed growing in your body, I explained to Austin. And how do you get a weed out of your garden? Well, you can dig it out, which is like surgery: doctors literally cut the cancer out of your body. (“With scissors?”) But you have to be careful when you dig a weed out of your garden not to take too much of the good stuff along with it and not to damage the roots of the other “good” plants that you want to grow there. Same thing in your body: sometimes when you cut the cancer out, you end up removing or hurting some other part of your body that you actually need.
So what’s the other way to get weeds out of your garden? You can spray them with chemicals (this was really when the kindergarteners really got excited). But the chemicals can hurt the other plants nearby the weed you’re spraying. Just like chemo: a chemical that kills the bad stuff but kills the good stuff too (hair, of course, is the easiest example of “good stuff” for children).
So what happens if you just leave the weed there, let it do its thing? It spreads, winding its way through your garden, twisting and choking other healthy plants, potentially destroying everything in its path. Same, duh, with cancer.
One of Braedan’s classmates earnestly told me a story of how he and his grandmother worked really hard to dig the weeds out of her garden and they thought they got them all and then a few days later they came back. Ah ha, exactly! (A new dimension added to my analogy.) That’s just like with Austin’s cancer. We dug it out and sprayed it with nasty chemicals and thought we got it all and then weeks, months, years later, it reappeared!
I was all excited to share these bits of wisdom with Austin, but he interrupted me partway through and said, “Wait, but Mom, why do soccer players play baseball?” Braedan and I stared at each other with raised eyebrows and then everyone devolved into a fit of giggles and thus ended my teachable moment.
Back to the garden . . .
We were released right on time yesterday, home by 1 pm, no crazy last minute procedures or tests or delays. About time we had an easy visit, huh?
And we got word on Friday that someone was preparing to make an offer on our house! We thought it might come in by the end of that day, and then were told we’d have it by the end of Saturday. Well, this morning our realtor told us that the couple, whose previous offer on another house had been rejected, decided at the last minute to offer more on that house as ours was their second choice. We were bummed all day, having felt so close to scratching that massive item off our massive to-do list. Then this evening our realtor called again to say their higher offer was also rejected and the agent was finalizing the paper work and we’d have an offer within the hour. Ah, phew, finally. An hour later the phone rings and my whole family, who was over for dinner, was clamoring about going,”It’s your realtor! This is the offer! Hurry, hurry, grab the phone!”
Weeelll, because nothing is ever so simple, the other sellers apparently called the couple back just moments before and accepted their offer after all. And that was that; in an instant our buyers slipped away and were gone.
Ugh. But we have had a lot of activity. Ten showings in the past three weeks, which is more than we had the entire five months it was on the market last year. So, it’ll happen, it’ll happen. One of these days, it will just happen.
But, aside from that major disappointment, all has been well here. Austin feels mostly fine; threw up this morning but then had a fairly normal day. He’ll get to go to school tomorrow before heading in for labs. We expect he’ll need blood again, which means another eight-hour Transfusion Tuesday watching springtime from the wrong side of a window.
Oh, and please remember to sign up for the CureSearch Walk as part of Team Austin by clicking here. If you’re registering your entire family, choose the option that says “Register multiple walkers at once” which will save you from having to enter your contact information over and over again for each of your kids or family members. Thanks to those of you who’ve already registered or donated or who’ve found the walks in your own cities. I really hope we can have a strong presence in honor of our little guy. And it’d be nice to see all of you in person for once!
. . . of every moment. That’s pretty much how Austin lives his life.
We checked in yesterday morning, after a quick trip to the out-patient clinic to verify that his platelets were indeed high enough for chemo. Everything has gone smoothly and we expect to be released shortly after lunch tomorrow. (I probably shouldn’t even say or type or think such things before they actually happen — a lot can go wrong between now and then . . .)
The flu season restrictions have been lifted and kids are now allowed outside as long as they’re not hooked to chemo at that moment. You can even drag your IV pole out to feel the sun on your face and breathe the fresh air. So this morning, Austin had 90 minutes “unhooked” from fluids and took a stroll to the Natural History Museum. How’s that for a little hospital field trip?
We have discussed many possible scenarios regarding the kidney as we move forward with the next round (which we’re pretty much committed to, although we all admit that things could change at any moment). The general consensus seems to be to wait and see. The kidney is still there and still doing its job, albeit more sluggishly than ever. But no one is saying that this is definitely kidney failure or that we’ve reached a point of no return. So we see what happens and we keep wishing and hoping and we take every day with a functioning kidney and without dialysis as a good day.
I mean, look at this guy. How can you not consider this a good day?
Sporting his brand new RB&C hard hat
complete with his name (thanks, Pat).
See the fun you can have with play-doh when you’re bald?
Austin as a triceratops
Mark and I went to the Rainbow Babies & Children’s Gala this past Saturday and while we were there, I bumped into a mother I had met on the floor during Austin’s first round of cancer. Her daughter also had Wilms but was diagnosed at a much older age, which is unusual for this disease which tends to strike kids under five, and it had already spread to her lungs.
I remember the day we met: A friend of mine who happened to work at the hospital back then introduced us, thinking we might want to talk since our kids had the same cancer. Well, it might have been the same but our circumstances couldn’t have been more different. We stood awkwardly in our doorway while Austin, having just celebrated his first birthday but not yet walking, crawled around on the floor and her daughter, eleven at the time, walked dizzily about the halls under a cloud of chemo.
We didn’t really have that much to say to each other that first time, both being so caught up in our own insular worlds, so we wished each other well and let it go. But we sure had a lot to say to each other on Saturday, as we stood on the ramp to the bathroom and shooed women past us so we could talk, talk, talk.
Her daughter passed away last summer, which I knew before I saw her so there was no awful moment of truth. But she was okay, this woman, she was doing well. I mean, I trust she has had horrible times and I don’t doubt that she misses her daughter every second of every day. But, even with all of that, she was fine.
Which I found enormously refreshing.
There were no tears between us as we stood there and shared our stories and expressed our sorrow for all the other has endured. We have both had terrible experiences (her’s obviously more terrible than mine), and yet we are both okay.
I am sure that some people would have looked at her that night, all dressed up and cheery, bidding on auction items with one hand and holding a glass of wine in the other, and thought she was faking it or somehow hiding her deep grief. As I am sure that some people look at me and think, “She can’t really be that okay; she must be putting up a front and breaking down behind closed doors.” But it’s not like that. You simply learn to adapt, a child with cancer becomes another (albeit overpowering) part of your life, and you take the horrible and mix it in with the wonderful and you find a way to live no matter what befalls you. You just keep going. Not only because you have to (which you do), but because you want to.
So there we stood in line at the bathroom, two mothers of children with cancer, one gone, one still fighting. We hugged and we smiled and we even laughed. But we never cried.
Because we are both okay.
Austin’s GFR results were 34. Right . . . no typo there: 34. Almost as bad as the result last month that necessitated a retest. And not nearly the still-not-fabulous-but-definitely-acceptable 66.
Here’s what this means in the world of kidneys: He can still get this next chemo, which is scheduled to start on Thursday, but it needs to be further dose-modified. If his GFR dips below 30, which we assume it will next month, he either has to stop this particular drug or (maybe — this hasn’t been confirmed yet by his docs but it makes sense to me) get dialyzed after each dose. We’ve already explored the possibility of doing only two of the three drugs in his protocol but have been told that their effectiveness lies in the specific combination and leaving one out would render any of them much less useful. So it’s sort of an all-or-nothing thing: either we stop chemo altogether or we continue and add dialysis to the mix.
For someone who doesn’t have cancer but suffers from regular old kidney disease, a GFR of 30 makes them eligible for transplant. Austin, of course, won’t be eligible for transplant until two years after the end of treatment (not two years after March 30’s clear scans, as I had hoped). And a GFR of 15 means thrice-weekly dialysis.
The path ahead seems a bit inevitable right now. I suppose the descent could slow or stop and we could hover here with a GFR of 34 for weeks or months or years, but we’re not holding our breath for that one. There are many many discussions to be held with our doctors when we’re in-patient this week; many questions to ask and answer; many scenarios to play out.
But no matter what we end up with, no matter which thorny path emerges from the forest, we will walk it.
I have some answers to the what-can-I-do-to-help question and this time not one of them involves going bald!
First, and this one is relatively easy no matter where you live, give blood. Austin has been using up his fair share from the blood bank lately so it seems like we ought to refill the coffers in his honor. And if you’re so inclined and have the time, give platelets too. Donating platelets takes a little longer and can’t be done as frequently as giving blood, but is important nonetheless. Maybe some of you who do this on a regular basis (Chris) can chime in with some advice in the comments section since I’ve never done it myself. I mentioned to my mom the other day that I’d been meaning to and she said, “No! You need to save your strength! Let other people do that.” I don’t really think it’s all that debilitating, but I’ll let the rest of you take that burden away from frail little me. Of course, your platelets wouldn’t necessarily go to Austin (although they might since he gets them so often!) but they would certainly go to some other deserving patient in need.
The next thing is fun and something I hope many of you will participate in. CureSearch, which I’ve written about on the Sites of Interest page, is hosting walks all across the country this spring, summer and fall to celebrate and honor children whose lives have been touched by cancer. Cleveland’s event is Saturday, May 8 at Wade Oval and includes a short walk (I think it’s just around the pond or something — they never mention a distance on the site so it can’t be long), plus games, music and food. It’s perfect for the whole family and a great way to celebrate Austin while also raising money for important research (CureSearch is where St. Baldrick’s dollars go as well). The event costs $10 for adults and is free for children under age 16. I just registered Team Austin and am hoping to have 100 people join his team (we’re up to four right now: me, Mark, Braedan and the little man himself) so please plan to come out and walk with us.
The registration page can be found here but beware that the photo on the page is not of Austin. I can only upload one that’s smaller than 50KB and I don’t have a file so small! Silly, but you already know how cute he is:
Oh, and one more: wish us well for tomorrow’s GFR. Let’s hope this little kidney is still kickin’.
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.
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.
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 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.