You are currently browsing the monthly archive for December 2009.
For some unknown reason, I was unable to get holiday cards out in the mail this year, so here it is, our virtual greeting to all of you.
2009: what a year. It started with the Dietrich family vacation to Jamaica, where the boys enjoyed swimming in the ocean, swimming in the pool, and naked soccer playing. They did not, however, enjoy riding the ponies.
A few weeks later, Mark and I had the distinct honor of traveling to Washington D.C. to witness the inauguration of Barack Obama as our 44th president.
March and April stunned us with what we thought was a recurrence of Austin’s cancer. This earth-shaking event proved to be relatively easy and quick (relatively being the operative word there) and suddenly we were right back where we’d started.
Summer flew by with a quick trip to Cape Cod, a few weeks in Chautauqua and much work preparing our current house for its market debut.
Fall was filled with significant milestones as Braedan eagerly started kindergarten and Austin reluctantly started preschool. We finally took possession of the new house and began what continues to be an on-going renovation project. Austin’s health was questionable, uncertain, indeterminate . . . and carefully watched.
And, well, you know where that led us.
All in all, it was a year of drastic ups and downs: good health, bad health and in-between health; old houses, new houses and almost houses; lives beginning, most notably that of our niece Amira, lives ending and lives being lived to the fullest.
As it began, 2009 was marked, more than anything else, by an enormous sense of HOPE. 2010 will begin the same way.
Happiest of new years to us all,
Krissy & Mark, Braedan & Austin
There is certainly something to be said for expecting the worst. These past two days have been so much better than I was anticipating. So much better. Now, it’s only two days and many of the effects of chemo are cumulative and therefore get worse as time goes on, but so far, it hasn’t been bad at all.
Austin feels totally fine. He’s eating and sleeping and playing like his regular little self. Mark and I have spent most of the past forty-eight hours wheeling the IV pole around behind him as he zooms his ride-on car around the nurses’ station, lap after lap. He’s eaten big hefty meals and has been peeing and pooping like a champ. Radiation is our one “outing” each day, requiring a trip to sedation and then a quick (I mean ten-minute!) visit to radiation before heading back to our regular space. Every time one of us goes home for a few hours, Austin sends numerous requests for additional toys, so his room now looks like a Toys R Us ad book. He chases the nurses with his remote control cars and is often found wearing his goggles in bed, chain saw in hand, ready for anything.
Oh, and before I forget, I deeply apologize for any rapid heart rates or spikes in blood pressure I caused by last week’s post that referred to “18 to 30 MONTHS of chemo.” As I think most of you figured out, my sleep-deprived self meant to write 18 to 30 weeks. It is, at times, understandably hard to think straight. I used to blame this on “mommy brain” but am finding that “chemo fog” affects more than just the immediate patient.
In other news, we pulled our house off the market last week as we can’t have strangers dragging their germs throughout it during showings. (Plus we can’t devote time and energy we simply don’t have to preparing it for showings.) We do need to keep it super-clean but not necessarily super-neat. Plus, we’re unable to move into the new house until the construction is completely finished and any unfinished portions are safely sealed off. This decision, of course, means a major mind shift for me, who was excitedly planning every new inch of our space. But we’ve decided that such a drastic change in our everyday surroundings probably isn’t wise right now, so will likely stay here until treatment ends. Both boys feel safe and secure here, they know their way around, the routines feel normal. It would be a shame for Austin’s first weeks and months in the new house (and all of our first weeks and months in the new house) to be tainted by cancer treatment.
If we wait until this is over, the move can be all the more symbolic. We will be moving into that new house as a new beginning, with a new lease on life, happy and together and alive, and we will not bring any cancer with us.
I overslept. Can you believe it? I rolled over from a very deep sleep, groggily looked at my alarm clock (which I’d set for 6 am) and saw that it was 7:15. 7:15! And we were supposed to have arrived in the sedation unit at 7!
Well, I dove out of bed and went rushing around the house, waking Mark, “Hurry, I’m late! I need your help!”, eating a quick breakfast because my blood sugar was low (of course), digging the car out from under the major snow dumped on it last night and zooming down the hill to arrive in sedation at 7:45.
Nice start to my day, huh? Of course, we had nothing with us except the few toys I managed to stuff in my purse along with a crumbled breakfast bar and two juice boxes. The sedation nurses were great; nobody said, “Late to your child’s first radiation appointment?! Tsk, tsk.” We went through the procedure quickly, forgetting the dose of anti-nausea medicine, and were in the elevator on the way down to radiation when the doctor got a page saying Austin Gallagher had lost his slot!
But we arrived mere moments later and he’d just been bumped to allow a more punctual patient to go first. After ten minutes, he was wheeled into that room, carefully placed on his body mold, making sure all the laser beams were lined up with the grid of permanent marker on his belly and chest. I had to wait outside which is always the hardest part. Not that he needs me; he’s totally “asleep” and has no idea I’m not dutifully by his side. It’s just the fact that something is happening to his body that is too dangerous to happen to mine. He’s being zapped with those poisonous beams and I can’t be anywhere in the vicinity, even safe under an apron.
So I sat in the hallway and drank coffee with dry “creamer,” while old bald people passed back and forth in front of me. This is not a place where I belong, where my beautiful baby belongs. This is not where we should be. And yet, here we are.
It lasted a few minutes and he was awake on the table, struggling to sit up in his half-drunk state. Back to sedation where he wolfed down that breakfast bar before we were delivered to our room on R2.
Shortly after checking in, as I put away Austin’s few toys and texted Mark lists of things to bring, he started throwing up. Puked all over his sweet little gown and bed. The nurse quickly ordered his Zofran as I cleaned him up. Then, as I was holding him in my arms, he did it again, this time all over me and the only pair of clothes I had. Ah, typical; it’s always the little things. They brought me scrubs, took my jeans to wash while I let the puke on my sweater dry. He quickly felt better and we colored, read books and watched Up for the gazillionth time.
Mark arrived in the early afternoon with a suitcase full of gear and I began the process of re-hanging his stars from the ceiling. I think I’m gonna have to put them into rotation, so that only small portions are hung for each visit because it takes a lot of time and some precarious balancing acts to get them all up there. But he loves them, and with good reason:
These images are from his room the week before Christmas. He has quite a collection! And it’s still growing.
You can see him there underneath his “starry sky.”
This is a silly Austin smile, not a pained grimace.
His star-covered tree
Mark is there now, still awaiting the administration of Austin’s first chemo dose. He needs to be hydrated for a few hours beforehand, hence the delay. So, they play and nap and twiddle their thumbs and then it begins.
Last night, as I was folding laundry before bed, I got sucked into the last fifteen minutes of The Sound of Music. There was the Von Trapp family, escaping the Nazis, literally climbing over the mountains to freedom. The little ones trudging along in their lederhosen, the father carrying the youngest on his back. And, as corny as it sounds, I saw us in them (minus the lederhosen). “Climb every mountain . . .” (come on, sing along now) “Forge every stream, Follow every rainbow, til you find your dream.”
Packing our bags again (you’d think by now I would just keep one ready and sitting by the door). Austin and I are due in the sedation unit tomorrow morning at 7 for his 8 o’clock time slot in radiation. He needs to be sedated every time he has radiation so he doesn’t move (telling a three-year-old to lie still doesn’t quite cut it), which turns what would be a fifteen minute appointment into an hour and a half one. Once we’re done there, we’ll check into our room on the oncology floor until Saturday.
He’ll get chemo each day this week, some days one drug, some days two, administered through his mediport. He’ll also be receiving IV fluids to help flush the chemo through his system because one (or two?) of the three drugs in his regimen is particularly hard on the kidney (great). He’ll have radiation each morning except New Year’s Day and will then continue with that once we’re out-patient for a total of twelve weekdays. We expect to be released Saturday morning and should then be home for two weeks before returning for the next round of chemo on January 18.
I’m assuming this week will actually be sort of boring. I don’t think he’ll be violently ill or anything; the anti-nausea meds he took the first time worked wonders and should again. The big difference this time is that his blood counts will take a bigger hit, making him much more susceptible to infection, but that’s not an immediate threat and won’t really be apparent until a good ten days later. So this week will probably be about killing time. In fact, I think a lot of the next four months will be about killing time. When he was a baby, it was fairly easy to keep him away from kids and germs. Now he’s used to school and playdates and I think he’ll be bored more than anything else as he’s sequestered at home with no one to entertain him but me. I’m afraid I’ll be bored silly myself, without my usual few hours off in the morning. But, after the last few years we’ve had, we’ll take boring. We’ll definitely take boring.
Today has been lovely. We walked this morning through a faint snow (which has finally turned our very green Christmas into a winter wonderland) out for a breakfast of pancakes and scrambled eggs.
Then a lazy day of trying out new toys (kids) and trying to weed through the mess (us). My friend’s mom, a professional photographer and regular follower of Austin’s story, came over this afternoon to take family pictures. She stayed late to photograph as we shaved Mark’s and Braedan’s heads. We were hoping Austin would want to join in because his hair is expected to fall out quickly and in big clumps this time (as opposed to the wispy hairs left in his crib the first time) and we thought it would be both easier to clean and easier to witness if we shortened it first. But he wanted no part of it and we let it go at that. He’ll join his bald buddies soon enough.
The boys are now asleep together in Austin’s bed (and by “the boys” I mean all the boys). Dreaming, I hope, of the peaceful happy days that are bound to come. Of the calm after the storm.
But first, the storm . . .
Boy, I thought we had a lot of toys last week . . . These kids have made out like bandits. And they are thoroughly enjoying it. A little proof for you:
The above stash came from the family of a cancer survivor who provides presents to those kids who are in-patient at Christmas. We obviously weren’t but our children sure benefitted from the fact that we almost were!
Christmas Eve at the Eyres’. We tried desperately to get one single photo where every one was looking at the camera, smiling . . . and not picking their nose! No luck.
New mittens all around.
On our way to both our Christmas Eve and Christmas evening events, Austin fell asleep for overdue and much-needed naps. So we arrived with him snoozing in our arms and everybody tiptoed around and said, “Oh, is he feeling so awful? Is he lethargic? Does he wish he could get up and play with the other kids?” And Mark and I were like, “No, this is just an afternoon nap! A regular kid sleeping soon to be a regular kid playing.”
And that regular kid playing he became. At Mark’s parents’ last night, he raced around being tickled by Grandpa and then designated himself as the pusher of his cousins in the Lazy-Boy-cum-Tilt-a-Whirl chair. Like nothing had ever happened. Like nothing in the world is the matter.
And the results of the kidney function test he had on Wednesday? Normal. The low end of normal but normal nonetheless. Is that just nuts? Normal kidney function. Man, am I glad we didn’t take that thing out. Chemo and radiation are aggressive enough; add dialysis to the mix and you have the ultimate axis of evil.
So, we’re here, enjoying the last of our normal time. We’re getting ready, both practically and psychologically. But mostly, we’ve been just hanging out, opening and assembling a truly obscene amount of toys. We have a lot planned for tomorrow and then it begins. The onslaught. The assault.
I asked Austin the other day if he was sad he had to go back to the hospital and he looked at me like I was crazy. “No,” he said like Duh, mom. I do expect that to change once he learns how he bad he’ll feel in there. But we’ll take his good attitude for now.
And as I was putting Braedan to bed tonight, we were talking about the coming months. (He’s learned to say, right at that moment I’m about to leave his room, “Wait, I want to talk about cancer. Can we please talk about Austin’s cancer?” Not exactly a request I can turn down, that smart smart boy.) I was telling him how hard it would be for all of us because the medicines we’ll give to Austin are going to make him feel so awful. And he said, all matter-of-fact, all big brown eyes, “Well, if the medicine is going to make him feel so yucky and is going to be so awful, but it”ll get rid of his cancer forever, then I vote for the medicine!”
Did I mention he was a smart smart boy?
I’ve been struggling. Focusing in on the absolute worst possible outcome in any given scenario. Certain that Austin would fall victim to every “rare but serious” side effect listed for each of his drugs (things that range from permanent hearing loss to irreversible organ failure to the big D). Wondering how many children I’d be buying Christmas gifts for next year.
But it’s lifting. I am, yet again, rising. Today has been a much better day. Austin is back, full force. He’s playing and eating and laughing and snorting like a pig (his new thing for some unknown reason). His resilience, his ability to get back up after being knocked down and down and down, reminds me to hope.
It started lifting last night. We’d finished dinner and I was standing there paralyzed by the mess in my kitchen and Mark told me to take some time off. “Stop worrying about whether you and I are putting in equal time right now. It doesn’t have to be equal; it has to be about meeting each other’s needs. Right now, you need a break. I don’t. The tables will turn and when they do, I can break down and you will step up.”
So I left. Went to Heinen’s and Target. Studied food labels for potassium and bought a few last minutes stocking stuffers, along with thermometers, hospital slippers and children’s Tylenol. I wandered around the store in a daze, thinking of my incredible husband and my incredible children. Struck by the goodness and kindness in my life and by the misery and cruelty in my life. The two opposite forces converging all at once, toppling over each other, jostling for position. Wondering which would win out, which would prove to be stronger in the end.
I drove home listening to the “holiday music station,” which is a form of torture in and of itself between the longing of “home for Christmas” songs to the new meaning behind “All I Want For Christmas is YOU” (not to mention the thoroughly annoying “The Twelve Pains of Christmas” which makes me want to shake someone: “Oh really? You couldn’t find a parking spot at the mall??”). But as I passed the twinkling lights on the houses, driving slowly with no traffic around, I was calmed. I pulled into the driveway of my full house and walked in my backdoor to the sound of laughter.
My three boys, one big, one medium and one little, were running around playing hide and seek. And laughing.
I know you all want to help. Every day, many times every day, people lament to me that they feel as if they’re just not doing enough. You beg for tasks needing completion or take my packages to the post office when you weren’t really planning on going (despite saying you were). You go quietly to my third floor to wrap my Christmas presents or bake Braedan a beautifully decorated basketball cake. You send cards and food, well-wishes and hand crafted stars from all across the country.
It is all lovely and it makes us feel loved. It does not, however, change what is happening. Nothing that any of you can do or send or bake or buy can change what is happening. You certainly make it easier, don’t get me wrong. And it is definitely appreciated. You make our lives more manageable and less stressful by providing us with our basic needs and many many of our not-so-basic needs. And I know, because I too have watched families go through this struggle, that it makes you feel better to help in some small way.
The small way that helps me the most is the words that you give me in return for the words that I give you. I read every email message and Facebook comment and blog comment you write, often many times over. You preface your words by saying you fear they’re not enough or you hope you don’t say the wrong thing or you wish you could do more. But those small tokens of love and encouragement, hope and support and well-placed (and much-needed) humor are enough.
Please know that I take your words and I carefully wrap them up and store them within me. And then I pull them out right when I need them most and they give me strength. Which, in turn, gives us all strength.
OK, so it’s probably a good thing that I’ve been far too exhausted and far far too busy to update for the past forty-eight hours because the plan had changed about forty-eight times since then. Well, no, it’s not the plan that’s changed so much as the details of the plan. But now I think we have it and I think it’ll stick, except of course for the unforseen detours we’ll undoubtedly take due to Austin’s health on any given day or week.
The basics: We are not starting chemo or radiation until Monday, December 28. Which means that yes, we will all be home, together under one roof, for Christmas.
We were released yesterday (Sunday) morning after what was an extremely long and scary night (for me at least) in which I felt certain, at several different points, that Austin’s kidney had just up and failed because he wasn’t peeing enough. I was literally lying in bed next to him, with my heart pounding in my chest, checking his diaper for wetness and feeling his belly for an imagined hardness that, in my own sleep-deprived and suddenly paranoid mind, meant he was filling up with fluid because his kidney could no longer filter it out. It took two separate calls to the nurse who then made two separate calls the doctor to calm me down and convince me that he simply hadn’t had a lot to drink that day. Actually he had had almost nothing to drink because he wasn’t allowed in the long and delayed lead-up to his surgery and then was groggy and only sipping in the after-math of anesthesia. It almost seems silly looking back on it except that I can see that these next few months are going to be filled with moments of concern that turn quickly into moments of panic.
Anyway, we’ve been home now for 36 hours and most of them have been spent holding Austin or dealing with a vicious cycle of constipation, cramping and diarrhea. It seems such a minor discomfort in the face of all that’s to come but I so badly want him to get well and be well and gather his strength that this setback has been both frustrating and heartbreaking. He does seem to finally be doing better and has had some really great moments, especially this afternoon at Braedan’s birthday party.
This party was the single sacred event this week that I told the doctors was completely off-limits. “Start chemo on Christmas Eve if you want, keep us overnight on Christmas itself but give me my son’s birthday party. Let me just be there.” Well, it was more than just me who was there. It was all four of us together, with a slightly dazed and definitely slower Austin enjoying the festivities as much as any other kid.
The rest of this week will be spent returning to the hospital over and over each day for all the necessary tests and appointments leading up to next week. Tomorrow, we have a quick visit to flush his mediport and remove the tube draining out of his incision site. Wednesday, he’ll have a six-hour long “nuclear scan” (I despise that name) to measure his kidney function in order to tweak his chemo dosages to a level his kidney can (hopefully) tolerate. Thursday is a much quicker audiogram to give us a baseline hearing level because one of the drugs can cause permanent hearing loss. I know, what the fuck, right? Funny the things that strike your heart, but I actually got over that one pretty quickly. We will take the boy deaf if that’s what we get.
And then three days of no hospitals, no doctors, no procedures, just family and feasting and presents and playtime and hopefully (for mom and dad, at least) a little peace and rest.
And then it begins. Monday we return for five days of in-patient chemo and radiation (the radiation is only in-patient because we are). Unlike his initial six months of chemo, which was administered once a week as an out-patient, this kind is administered each day for a series of days (sometimes five, sometimes three depending on which combination of drugs). Sounds to me like the real reason for being in-patient is for symptom control. At first, I thought, “No way, we can handle this at home. We’d always rather be at home.” But just these past two days of being here, when what he’s suffering from is pretty minor in comparison, I know it will be easier to be in the hospital. With people at the ready twenty-four hours a day to help us: change the sheets, clean the puke, make the decisions about what medicine to offer. We won’t have to wonder if a reaction is normal or if it’s dangerous, we won’t have to guess at how to best treat something, we won’t have to juggle the immediate needs of the sick child with the immediate needs of the healthy one.
Chemo will last anywhere from 18 to 30 weeks (sorry to all of you who read that when it accidentally said “months”!), depending on how much Austin (and his bone marrow) can tolerate. We’ll have one week on followed by two weeks off for “count recovery,” which allows his blood cells and bone marrow to multiply before being destroyed yet again. His immunity will be quite a bit weaker than it was the last time and we do expect to pull him out of school. This particular chemo regimen is actually designed to last for 90 weeks but few children are able to make it that far because their bone marrow is so thoroughly depleted. We are committed to 18 weeks and then may add the second 12-week cycle if he’s able and if we all deem it necessary.
So, having a plan is helpful, lets me prepare, both mentally and practically (new meal and playdate requests will come in a few more days). But more than anything, I am scared. Scared scared scared. Scared for how it’s going to be, scared for what it’s going to do, scared for what it might not do. I am trying to look at the one small inch in front of me, just one tiny step, one day at a time. And I know we’ll do it. But I am terrified.
Just because you have a plan doesn’t mean things will go according to it . . . .
Don’t worry, nothing major except that instead of sitting around my table enjoying this delicious meal with my family, I am sitting in front of the computer quickly eating before packing my gear for one more night.
Today’s surgery to remove the catheter and insert the mediport was an “add-on” and they originally thought we’d go at 11. Then 12. Then 1. Austin was finally taken off to anesthesia at 3:05 and back in our arms by 5:15.
But that’s not why we’re staying. Because Austin is so small, they were unable, despite several attempts by the chief of pediatric surgery, to thread the mediport line through the vein in his neck. Ultimately they made a new incision and ran it lower down on his torso. It makes no real difference to him or us in the long run but they do want to do a repeat x-ray tonight on the neck to make sure there’s no damage and keep us for observation.
But first thing tomorrow, we are outta there.
And then, back on Monday for out-patient radiation and maybe (this part is indeed bad news) maybe back on Tuesday to start chemo. Chemo this time around is in-patient, usually for four days at a time which would mean . . . you guessed it . . . Christmas at the hospital.
That’s not set in stone yet and there are a few things that could postpone the start of chemo until Monday December 28 (none of which has anything to do with anyone feeling sorry for a child spending Christmas in the hospital), so there’s still hope. It doesn’t matter either way; we’ll just manage. That’s what we do.
Did I mention that this process is a series of ups and downs, a winding road of highs and lows and of ever-changing emotions and ever-changing plans?
We have a new plan, a totally different plan, and Mark and I are very very pleased with it.
We are keeping the kidney, going to let it run its course, see just how much farther it can chug along. There are no guarantees with this little organ, it sure has been subjected to a lot and it has more to face, but the surgery was a success and we’ll leave it there and see what it can do.
We will proceed with radiation exactly as I described, starting this Monday and doing the first four days before taking Christmas and the weekend off.
And we will do chemotherapy. It is a high dose, much much worse than what we’ve been through before, but it only lasts seventeen weeks. There are a lot of details I will share tomorrow (or whenever I have a few moments) but here’s the thinking behind this shift.
This type of Wilms’, the kind he has now, has a higher propensity of metastasizing to the lungs or liver. This spreading is halted only by chemo. That’s the purpose of chemo: systemic control, hitting the whole body with a poison that can kill any hiding cancer cells. The purpose of radiation is local control: killing the cancer cells in the very spot they appeared.
We have removed the actual tumor (for the most part), so now we treat “locally” with radiation killing any cells that may have spilled in that location. And we treat “systemically” with chemo killing any cells lurking elsewhere. Doing both (and doing it much more quickly than my pie-in-the-sky plan to develop a specific drug-sensitivity profile –something that won’t be widely available for another ten years) gives us the best chance at long-term survival. Taking the kidney out may — or may not — up those chances slightly. It’s not clear, especially because it makes the “local control” issue somewhat redundant. We’d basically be hitting the local cells with a double whammy and doing nothing about the systemic cells.
Does this make sense? Well, I don’t really care if it does or not right now because we feel really really good. We plan to remove the dialysis catheter (yay!) and insert a Mediport (a much improved under-the-skin Broviac line) tomorrow and then go home. Yes, that’s right. Go home. Tomorrow.
This is not going to be easy. This chemo will be pretty brutal. But we did this past surgery for a reason. To see if we can save that kidney and still provide adequate treatment. We believe this will do that.
If someone had told us a week or a month ago that we’d be rejoicing the fact that our child was about to undergo twelve days of radiation and seventeen weeks of highly toxic chemo, we’d think they were crazy. But tonight, we are rejoicing.
This just might work.