You are currently browsing the monthly archive for January 2010.

We’re hanging in there, thanks to an army of friendly volunteers helping wrap, pack, carry, load, move, feed and care for. Austin is still in the hospital, but should be released tomorrow which means that, yes, thankfully, we will have our last night together here on Edgehill Road, a minor issue in the grand scheme but one that seems extremely important to me nonetheless.

His fever continued to rage throughout the night on Thursday, due in large part to his adamant refusal to take Tylenol. He doesn’t usually mind Tylenol (and, in fact, sometimes he downright loves it . . . ) but on that particular night, he simply would not take it. I think it was the one thing he was able to exercise some control over and he would not give that up. Finally, around 2 in the morning, the nurse and I held him down and forced it into his mouth.  He, of course, spit half of it out but enough made it into his system to begin the long slow (and very necessary) process of lowering his temperature. Early the next morning, I told him we wouldn’t be allowed to ride the tricycle in the hallway if he had a fever and he happily and quickly downed another dose. He then turned to me and said, “Ok, let’s go.”

He was briefly allowed out today after twenty-four hours of no fever but only while wearing a mask (because of his cough). He was surprisingly okay with this rule and donned his Mickey Mouse face mask while cruising the halls:

His counts have been slowly rising but we need to wait until his blood culture continues to be negative for bacteria growth. I think the deadline is midnight tonight so if all goes well and no last minute symtoms arsie, we should be sent home before lunch on Sunday.

The small fact of our being together in our home one last time somehow makes all the insanity of these few days bearable. And trust me, there has been insanity. Take, for instance, the gas leak at the new house in the main line from the street that required a full crew out there on this 15-degree morning digging a new hole and placing a new pipe. But, it’s fixed now, the heat is up and running yet again. And, as is somehow always the case, this too will be okay. We will be out of that damn hospital and home together. Home here and then home there. And that is all that matters.

FORGIVE THE ALL CAPS.  THIS HAPPENS FOR SOME BIZARRE REASON WHEN I UPDATE FROM MY PHONE. I’M NOT YELLING BUT MAYBE I SHOULD BE . . .                                                                                                                                                                                                                                                         REMEMBER THAT WE’RE SET TO MOVE IN FOUR DAYS AND ARE IN THE MIDST OF PACKING UP OUR ENTIRE HOUSE?  AND REMEMBER THAT LITTLE RULE ABOUT GOING TO THE HOSPITAL IF AUSTIN HAS A FEVER OVER 100.4? CAN YOU GUESS WHERE THIS IS GOING?                                                                                                                                                                                                             WE WENT TO THE CLINIC TODAY FOR LABS WHICH PROVED THAT HIS COUNTS ARE INDEED LOW (WHICH WE ALREADY KNEW BY HIS GENERAL LOW MOOD). HE FELL ASLEEP ON THE WAY HOME AND GOT IN A GOOD NAP AT HOME WHILE I (AND MARK’S MOM AND SISTER) PACKED. WHEN HE WOKE UP, HE WAS ON FIRE. NOT “OH, WILL SOMEONE FEEL HIS FOREHEAD AND TELL ME WHAT THEY THINK?” FIRE BUT DEFINITE, NO WAY AROUND IT, MOTHER KNOWS BEST FEVER.  SURE ENOUGH: 102.7.


And now, after many months of patient waiting, I present to you . . . my mudroom:

Like I said, the name “mudroom” just doesn’t do this place justice.

Control room, maybe? Situation room?  Super room? Mud mansion??

The view to the back yard

I guess they like it.

I know you’d all be jealous of me, except for that pesky little issue of having a child with a sneaky cancer for the second time. At least, I’ll be organized . . . .

My postings will surely be sporadic this week and next as we are in the throes of packing up our house and I can barely make my way through the maze of boxes to reach the computer. We’ve only been here for eight years but, oh my god, do we have a lot of stuff!  I don’t know how on earth people manage to move out of houses they’ve lived in for twenty, thirty, forty years. I am a pack rat, for sure. The amount of already-used wrapping paper I have stored on my third floor is embarrassing.  Some of it is so crumpled that I’d never even wrap a present in it.  Time for the recycling bins . . .

The new house should be finished tomorrow and then a cleaning crew will come through on Thursday.  I’d actually considered taking you all up on your many offers of help with that until my mom convinced me that no one really wanted to spend their precious free time cleaning my dusty house and instead offered to pay for a service.  So thank my mom and dad when you see them next!

We’ll make some trips over the weekend with carloads full of gear and then the moving truck comes on Monday. So, in a mere six days, we will be sleeping under our new roof.

Austin’s doing fine. We hit a “sore spot” with one of his shots over the weekend and now he’s been fighting them, which is really a bummer because we’re still in three-a-day right now. But Braedan, my child who screamed bloody murder when he got his second H1N1 shot two weeks ago, has been begging for injections. We gave him one — just an empty syringe poked into his leg — last week upon his request, and now he keeps asking for more!  Oh boy.

Austin’s blood counts are down but I’m hoping they’ll have risen by the time we go for labs on Thursday so I can send him to school next week. Not only would this make the move easier, but when Mark got home yesterday and asked Austin about his day (our dinnertime ritual, often dominated by Braedan, the big talker), Austin said, “I didn’t have a day.”

“Of course you had a day,” Mark replied.

“But no,” said the little one, “I didn’t go to school.”

Oh sweet boy.  Time to get him back in there so he can “have a day.”

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.

We had a day once, back during the first round of cancer, that a nurse described as The Day of a Thousand Paper Cuts. We were in the PICU following one of Austin’s surgeries and he was on temporary dialysis but the dialysis machine kept breaking and leaking water all over the floor. When a different machine was finally brought in (and these are huge machines that take up most of a hospital room), the catheter in his thigh wouldn’t work. It wasn’t the end of the world; we eventually made it all work out — a thousand paper cuts won’t kill you after all, but, man, do they hurt.

That’s how we feel again today — like we’re being battered and annoyed and delayed and distressed by a thousand paper cuts.

Austin’s Mediport continues to be the source of nothing but trouble. When we did that ultrasound last week, we did find a small clot forming not in the line but near the line in his left internal jugular vein. This clot is not what we were looking for (an explanation for why we can’t draw blood off the line) but it is of course a problem that needs to be fixed before it turns into a bigger problem. And the way to fix it is to give Austin a nice little blood thinning medicine that has to be injected under his skin twice a day for three months. And I was worried about those Neupogen  shots once a day for a week! Ugh.

But that’s just the beginning. Today they did another chest x-ray to see if they could further determine how usable the Mediport even is. And it’s not. Not usable, that is. Its position has shifted slightly over the course of the past month and it’s now lodged under his clavicle. It’s still usable for today’s chemo but tomorrow he’s scheduled to have another surgery, albeit minor, to replace the line, which no one is even positive they can do.

If the surgery they’re attempting doesn’t work, he’ll end up with a PICC line instead which runs along his arm. I’m not completely familiar with the pros and cons of all these varied central lines (remember, I’m the one who thought the Mediport would be a breeze compared to the Broviac) but I do know that the PICC line is the third and last choice of doctors and there surely must be a reason for that.

Oh, and now we’re not sure if we’ll even get to go home tomorrow or if that will be delayed until Thursday. Ugh.

Chemo has been fine. Austin was a total grouch today (before his much-needed three hour nap) but the effects of chemo are seemingly non-existent. It’s just these damn paper cuts we have to worry about . . . .

Back to the hospital today, for the next round of chemo. My little guy was zipping about the halls on his tricycle all afternoon, a sight completely incongruous with his balding head and IV line.  But typical Austin, nonetheless.

This week includes the third of his three new drugs, one we’ve never had before that’s supposed to be the worst of the bunch. So far, he’s fine but we’ve barely begun so we’ll see. He only gets that one twice, today and tomorrow, and the other one he’ll get through Wednesday and then we’re home again.

Speaking of home . . . listen to this one: You know how we thought we’d stay in this house until the end of treatment and then make our big move into our big house? Well, have you ever heard me say that things do not always go according to plan? Our furnace, the one here in our current house, is on its last legs, a little fact we discovered on Friday. And it definitely needs to be replaced (I do have a recurrent fantasy that involves some random new homeowners complaining to their friends, “Can you believe it? We just bought this house and the furnace needs to be replaced already?!”). But no, this is our responsibility and it needs to happen sooner rather than later. The big problem is the amount of dust and asbestos (yes, asbestos) and unsafe air it’s going to kick up into Austin’s breathing space. It is possible to do it in a more contained way but considerably more difficult and, duh, expensive.

So we looked carefully at our situation and realized it was just plain silly to stay here: our house is ready (or will be in two weeks’ time), it’s clean and safe (or will be in two weeks’ time) and it’s where we want to be. So, it’s where we’ll be . . . in about two weeks’ time.

They do say the three most stressful events in life are 1) serious illness/death (which — hello! — should really be two separate things), 2) divorce and 3) moving. Good thing Mark and I are doing fine!

But, really, we’re excited for this. I’d been wanting to move anyway, not fully sold on our decision to wait. It’ll be a crazy few weeks, there’s no doubt, but then we’ll be there in our new space, the home we’ve created, and we’ll be happy.  Those fears Mark and I had about whether Austin would always associate the new house with feeling lousy seem unfounded — he likes the hospital after all. What more proof do I need that he can be happy anywhere?

The death of your child follows you everywhere you go, hovering in your blindspot. That’s how Lorrie Moore describes parenting a child with cancer in People Like That Are The Only People Here. In your blindspot: just out of reach, never in focus, but there.

So you move along, heading for that sacred destination (cure, survival) and on good days, you get into a groove, lulled into a feeling of comfort, of certainty even (certain that this child will be okay, this child will escape the worst fate). But then, for whatever reason, you reposition yourself and glance over your shoulder and there it is.

Just lingering, hovering. If you try to really look it in the face, try to grab it and shake it and tell it to leave you the hell alone, it would disappear. It’s unreachable, ungrabbable. But there.

Wilms’ tumor is one of the big success stories of pediatric cancer. But that’s because it’s relatively easy to beat the first time around. Once it makes it past that first round, once it survives the initial onslaught . . . well, then it’s not so easy to beat.

We don’t put much weight in survival statistics these days. Of course, there are no accurate numbers for a kid like Austin; he doesn’t fall neatly into any pre-existing category. When we pore over the research with his doctors, we inevitably say, “Well, he’s a little bit like this and a little bit like that,” and “Oh, this case looks like his except for (insert major event here).” So we really have no guidepost, no reliable map to follow.

But if we were forced to give a number, if we had to choose some random survival statistic, it would surely fall below the 50% mark. Which is partly why we don’t put much weight in survival statistics these days. Austin has always fallen outside of the range of normal. Since Day One, nothing about his cancer has been textbook. So we buck up and figure this won’t be textbook either; he’ll just continue beating the odds because that’s how he does it.

The treatment plan we’re following is a full-court press. We’re going whole hog, guns blazing, no holds barred, enter whatever metaphor you’d like to say we’re doing every damn thing we can. When I said in an earlier post that this plan “just might work,” I was wrong. It must work, it has to work.

It’s all we’ve got.

than before.”

That was the subject line of the email I received this morning from Austin’s doctor containing the results of yesterday’s kidney function test.

Even better than before.

Three weeks ago, his kidney function was on the low end of normal, which was only surprising because it was still within “normal” range at all. Now it’s well within that normal range, right smack dab in the middle of where it’s supposed to be. After surgery upon surgery upon surgery (and a few more surgeries), after chemo and radiation, The Little Kidney That Could is still going.

My response back was simply, “Wow. This kid(ney) is remarkable.”

Nothing more to say than that.

January 2010


January 2010