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Austin had his two-and-a-half year scans today.
He went briefly to school to partake in the Grands Day celebrations, but I picked him up at 10:30 and we headed down to Rainbow for a long day of procedures. First an EKG and ECHO, because he needs clearance from cardiology before his December 7th surgeries (tonsillectomy and finger repair — more on those next week). Results from both were fine: The VSD that marked our first step towards diagnosis more than five years ago still exists but is so tiny that it poses no threat at all. The enlargement that caused concern during his second round of treatment is less pronounced, probably because his blood pressure is as normal as it’s ever been. His heart is functioning fine and, while we need to continue monitoring it well into the future, there is no current worry or need for action or cause for concern.
Then it was time for abdominal ultrasound, always the most significant test of the day. But that too was normal, no changes from last time, the ol’ inappropriately labeled “unremarkable” exam. Then a chest x-ray, which I haven’t actually seen results for but we’ve never had any real reason to worry about cancer metastasizing to his lungs.
And then it was off to see Dr. Auletta in the out-patient clinic. After labs and a quick physical exam, he sat talking with us and reflecting on the day he’d had so far (more on that tomorrow). Ever conscious of respecting patient privacy, he nonetheless commented that today he’d seen the “clinic of miracles.” The kids and their parents who happened to walk through the doors today were the remarkable one, the lucky ones, whose stories could have ended quite another way.
You know, a lot of children diagnosed with cancer in the twenty-first century have excellent prognoses right from the very beginning. Of course, it’s still a big deal and still terrifying for their families (all you hear on Day One is “Your child has cancer” and nothing else quite makes it through). But the doctors who see those kids on their very first days know, that as long as nothing goes horribly wrong, as long as science works as it’s supposed to, they’ll be alright. (Austin was actually in that category for about one day.) And then there are others who the doctors know, despite all they may hope and despite how hard they end up trying, that they won’t be alright. And then there are the kids in the middle, whose cases are tricky, whose cancers are unpredictable, but who still present with a shred of hope. They need a hell of a lot of work, they need vicious medicines and endless care and a ferocious internal fight. But those are the kids who can become miracles. And Dr. Auletta saw them today.
Austin among them.
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
This past Tuesday, I had another opportunity, like last year, to speak to a class of first-year med students at Case. It was part of their weekly “touchy-feely” seminar, the class that reminds them why they chose to become doctors in the first place.
The biggest message (I hope) I sent was that patients are whole people. Every single person sitting on that paper-covered table or lying in that sterile bed has hopes and dreams and fears as real and as valid as any of ours. Every single patient (and their spouses, children, and parents), has a life outside the walls of that hospital, has a past and, hopefully, has a future.
I really enjoyed my time there (you know I love to talk) and got to speak with some of the students afterward and hear their own stories (everyone has a story, of course, even if they’re not terribly dramatic or even if they don’t have the same platform from which to broadcast those stories that I do). There was one man, whose circuitous route to medical school was relayed to me by their instructor. He had been a mathematics professor at Oberlin for eighteen years, tenured and all, when his wife got cancer. He was so disappointed by her care (on what level I’m not sure) that he decided he simply must become a doctor himself to do a better job. Talk about not just sitting back and complaining about something you don’t like but actually doing something, changing your whole life, to improve it. That’s impressive.
The experience reminded me of the Yale Medical School commencement speech that my girlfriend Katy, a nurse in Charleston, sent me a few weeks ago. It’s very moving and powerful and is a strong reminder to these new young doctors that they have a choice: they can treat their patients, and their patients’ caregivers, as whole human beings. Or not. It’s long, but definitely worth reading:
Dean Alpern, Faculty, Families, Friends, and Honored Graduates…
I don‘t have words enough to express my gratitude for the chance to speak with you on your special day. It would be a pleasure and honor at any graduation ceremony. But, I have to tell you, to be up here in this role in the presence of my own daughter on the day that she becomes a doctor is a joy I wouldn‘t dare have dreamed up. I hope that each of you will someday have the chance to feel as much gratitude and pride and love as I feel right now, joining you, and, especially, joining Jessica. Thank you very much. I am so proud of you, Jessica.
Now, I have to tell you the truth about Jessica. Jessica was supposed to be a boy. At least that‘s what the ultrasonographer said when we took a look at “him” in utero. “Never been wrong,” said the ultrasound tech as she pointed out the anatomy – there was the “thing.” My wife and I were delighted. We saw the thing, too. Clearly. We had two sons already, and they were fantastic. A third boy – terrific!
But, you know, to be honest, and with no offense intended to Ben and Dan, who are here today, too, we were sort of hoping for a change. I had only brothers, and Ann, my wife, I knew, wanted a chance to raise a daughter. To our friends we said, “Boy… Girl…We don‘t care; just as long as he is healthy.” But… we were lying, just a little.
And then: the surprise. I was right there, in the c-section room – Ann delivered all four of our children by c-section – and, instead of Jonas, whom we were waiting for, out popped, not Jonas,
but Jessica. “Oh, my goodness,” the obstetrician exclaimed, “it‘s a girl!” Imagine the joy – Ann and I literally squealed. We screamed. “A daughter,” Ann screamed, “a daughter. We have a daughter!”
The obstetrician said, “Hmmmm…. That never happened before. That . . . thing on the ultrasound must have been the umbilical cord.” Whatever. No question at all – that was one of the peak moments of my entire life. I will never, ever forget it. I had a daughter.
How do I know that moment of miracle – that surprise and celebration? Well, it‘s obvious. I told you. I was there – I was rightthere in the c-section room, holding my wife‘s hand. Greeting my new, unexpected daughter. Watching the miracle.
Maybe you know this; maybe you don‘t. But, if that had happened 20 years before Jessica was born, or even 10, I would have missed it. I wouldn‘t have been there. I couldn’t have been there, because fathers weren‘t allowed in c-section rooms. We weren‘t supposed to be there. That was the rule. Then, somebody changed the rule; somebody courageous, I suspect. And, so, I got to see a miracle.
Let me read to you an email I received on Thursday, December 19, 2009. It came from Mrs. Jocelyn Anne Gruzenski – she goes by “Jackie.” I did not know Jackie Gruzenski at the time; she wrote to me out of the blue. But I have since connected with her. And, she gave me permission to read her email to me to you. Here‘s what she wrote:
“Dr. Berwick, …
“My husband was Dr. William Paul Gruzenski, a psychiatrist for 39 years. He was admitted to (a hospital she names in Pennsylvania) after developing a cerebral bleed with a hypertensive crisis. My issue is that I was denied access to my husband except for very strict visiting, four times a day for 30 minutes, and that my husband was hospitalized behind a locked door. My husband and I were rarely separated except for work,” she wrote. “He wanted me present in the ICU, and he challenged the ICU nurse and MD saying, “She is not a visitor, she is my wife.‟ But, it made no difference. My husband was in the ICU for eight days out of his last 16 days alive, and there were a lot of missed opportunities for us.”
Mrs. Gruzenski continued: “I am advocating to the hospital administration that visiting hours have to be open especially for spouses… I do not feel that his care was individualized to meet his needs; he wanted me there more than I was allowed. I feel it was a very cruel thing that was done to us…”
Listen, again, to the words of Dr. Gruzenski: “She is not a visitor; she is my wife.” Hear, again, Mrs. Gruzenski: “I feel that it was a very cruel thing that was done to us.”
“Cruel” is a powerful word for Mrs. Gruzenski to use, isn‘t it? Her email and the emails that followed that first one are without exception dignified, respectful, tempered. Why does she say, “cruel”?
We will have to imagine ourselves there. “My husband and I loved each other very deeply,” she writes to me, “and we wanted to share our last days and moments together. We both knew the gravity of his illness, and my husband wanted quality of life, not quantity.”
What might a husband and wife of 19 years, aware of the short time left together, wish to talk about – wish to do – in the last days? I don‘t know for Dr. and Mrs. Gruzenski. But, I do know for me. I would talk about our children. I would talk about the best trip we ever took together, and even argue, smiling, about whose idea it was. I would remember the black bear we met in a clearing in the Wrangell-St. Elias Range; the cabin at Assiniboine; the Jøtenheim mountains of Norway. I would remember being lost in Kyoto and lost in Prague and lost on Mount Washington, and always found again. Mushroom soup at Café Budapest. And seeing Jessica born, and Ben, and Dan, and Becca. We would have so much to talk about. So much. The nurses would pad in and out of the hospital room, checking i.v.s and measuring pulses and planning their dinners and their weekends. And none of what the nurses and doctors did would matter to us at all; we wouldn‘t even notice them. We would know exactly who the visitors were – they, the doctors and the nurses. They, they would be the visitors in this tiny corner of our whole lives together – they, not us. In the John Denver song it goes this way, “… and all the time that you‘re with me, we will be at home.”
Someone stole all of that from Dr. and Mrs. Gruzenski. A nameless someone. I suspect an unknowing someone. Someone who did not understand who was at home and who was the guest – who was the intruder. Someone who forgot about the black bear and the best mushroom soup we ever had – the jewels of shared experience that glimmer with meaning in our lives. Someone who put the i.v. first, and the soul second.
Of course, it isn‘t really “someone” at all. We don‘t even know who, or what it is. Its voice sounds rational. Its words are these: “It is our policy,” “It‘s against the rule,” “It would be a problem,” and even, incredibly, “It is in your own best interest.” What is irrational is not those phrases; they seem to make sense. What is irrational is what follows those phrases, in ellipsis, unsaid: “It is our policy … that you cannot hold your husband‘s hand.” “It is against the rules … to let you see this or to let you know this.” “It would be a problem … if we treated you on your own terms not ours.” “It is in your own best interest … to miss your daughter‘smoment of birth.” This is the voice of power; and power does not always think the whole thing through.
Even when it has no name and no locus, power can be, to borrow Mrs. Gruzenski‟s word, “cruel.”
I want you to celebrate this day. I want you to experience all of the pride, all of the joy that it brings you to have reached this milestone. I am not telling you Dr. and Mrs. Gruzenski‘s story to sadden you. I am telling it to inspire you. I want you to remember it, if you can possibly remember anything I am saying to you at this chock-full moment of your lives, because that story gives you a choice.
You see, today you take a big step into power. With your white coat and your Latin, with your anatomy lessons and your stethoscope, you enter today a life of new and vast privilege. You may not notice your power at first. You will not always feel powerful or privileged – not when you are filling out endless billing forms and swallowing requirements and struggling through hard days of too many tasks. But this will be true: In return for your years of learning and your dedication to a life of service and your willingness to take an oath to that duty, society will give you access and rights that it gives to no one else. Society will allow you to hear secrets from frightened human beings that they are too scared to tell anyone else. Society will permit you to use drugs and instruments that can do great harm as well as great good, and that in the hands of others would be weapons. Society will give you special titles and spaces of privilege, as if you were priests. Society will let you build walls and write rules.
And in that role, with that power, you will meet Dr. and Mrs. Gruzenski over, and over, and over again. You will meet them every day – every hour. They will be in disguise. They will be disguised as a new mother afraid to touch her preemie on the ventilator in the incubator. Disguised as the construction worker too embarrassed to admit that he didn‘t hear a word you just said after, “It might be cancer.” Disguised as the busy lawyer who cannot afford for you to keep her waiting, but too polite to say so. Disguised as the alcoholic bottoming out who was the handsome champion of his soccer team and dreamed of being an architect someday. Disguised as the child over whom you tower. Disguised as the 90-year-old grandmother, over whom you tower. Disguised as the professor in the MRI machine who has been told to lie still, but who desperately needs to urinate and is ashamed. Disguised as the man who would prefer to know; and as the man who would prefer not to know. Disguised as the woman who would prefer to sit; and as the woman who would prefer to stand. And as the man who wants you to call him, “Bill,” and as the man who prefers to be called, “Dr. Gruzenski.”
Mrs. Gruzenski wrote, “My husband was a very caring physician and administrator for many years, but during his hospitalization, he was not even afforded the respect of being called, “Doctor.‟” Dr. Gruzenski wanted to be called, “Dr. Gruzenski.” But, they did not do so.
You can. That choice is not in the hands of nameless power, not fated to control by deaf habit. Not “our policy,” “the rule.” Just you. Your choice. Your rule. Your power.
What is at stake here may seem a small thing in the face of the enormous health care world you have joined. It is as a nickel to the $2.6 trillion industry. But that small thing is what matters. I will tell you: it is all that matters. All that matters is the person. The person. The individual. The patient. The poet. The lover. The adventurer. The frightened soul. The wondering mind. The learned mind. The Husband. The Wife. The Son. The Daughter. In the moment.
In the moment, it is all about choice. You have a magical opportunity. You have the opportunity to decide. Yes, you can read the rule book; and someday you can even write the rule book. Decide. Yes, you can hide behind the protocols and the policies. Decide. Yes, you can say “we,” when you mean, “I.” Yes, you can lock the door. “Sorry, Mrs. Gruzenski, your 30 minutes are up.” You can say that.
But, you can also unlock the door. You can ask, “Shall I call you “Dr. Gruzenski”? “Would you like to be alone?” “Is this a convenient time?” “Is there something else I can do for you?” You can say, “You‘re the boss.” You can say, “Tell me about the best trip you ever took. Tell me about the time you saw your daughter born.”
In my first week of medical school, I was assigned a tutor: Dr. Edward Frank. He was a vascular surgeon, and he was to supervise me in my physical diagnosis course. I read what Harvard Medical School called, “The Red Book.” It was all about the history and physical exam. Hundreds of questions to ask – history, physical, chief complaint, review of systems, and on and on. I stayed up very late, studying all those questions; memorizing the ritual. I knew all the right questions, I thought. I met Dr. Frank the next afternoon, and he took me to see Mrs. Goldberg, who was in the hospital to have her gall bladder taken out. Dr. Frank brought me into Mrs. Goldberg‘s room, into her presence, introduced me, and invited me to begin. My very first history and physical.
“Tell me, Mrs. Goldberg,” I said, “when did your pain begin?” Dr. Frank, the surgeon, interrupted me. He gently put his hand on my shoulder, and he gave me a gift I will never, ever forget. And I will pass his gift to you. His gift was a question that The Red Book left out.
“Oh, Don,” he said. “Before you ask that, let me tell you something very special. Did you know that Mrs. Goldberg has a brand new grandson?”
Decide. You can read the rules. Or, you can say, “Pardon me.” “Pardon this unwelcome interruption in your lives. Thank you for inviting me to help. Thank you for letting me visit. I am your guest, and I know it. Now, please, Mrs. Gruzenski, Dr. Gruzenski, what may I do for you?”
Congratulations on your achievement today. Feel proud. You ought to. When you put on your white coat, my dear friends, you become a doctor.
But, now I will tell you a secret – a mystery. Those who suffer need you to be something more than a doctor; they need you to be a healer. And, to become a healer, you must do something even more difficult than putting your white coat on. You must take your white coat off. You must recover, embrace, and treasure the memory of your shared, frail humanity – of the dignity in each and every soul. When you take off that white coat in the sacred presence of those for whom you will care – in the sacred presence of people just like you – when you take off that white coat, and, tower not over them, but join those you serve, you become a healer in a world of fear and fragmentation, an “aching” world, as your Chaplain put it this morning, that has never needed healing more.
~ Dr. Donald M. Berwick, May 24, 2010
Pediatric Surgery, known to we hospital insiders as “Peed Surge,” a place I’ve visited far too many times over the past three years . . . is somehow where we ended up yesterday.
No, there is not another freak accident to report, just a freaky sort of day, where everything seemed upside down and backwards and I couldn’t quite figure out why we were where we were.
On Wednesday afternoon, the secretary from the orthopaedic surgeon’s office called to schedule Thursday’s appointment to finally remove those stitches. She said, “1:30″ and I quickly said, “Oh perfect,” relieved that the boys could stay at Dinosaur Dig camp until noon. Then she said we needed to arrive at 11:30 and that Austin couldn’t eat in the morning.
Oh bother, I thought, why on earth do they schedule kids in the afternoon if they’re not allowed to eat anything? And why on earth do we have to be there so darn early if this is supposed to be a ten-minute procedure? But I figured I knew my way around this stuff and didn’t ask any questions (insert foreshadowing music here). I got Austin up early and gave him a few bites of applesauce (more foreshadowing music), along with his morning meds, and dropped them off at camp for a quick two hours.
I picked them up at early at the Children’s Museum, which happens to be located a mere quarter mile from Rainbow (more music), then brought Braedan to a friend’s house and continued on my way with Austin to the hand surgeon’s Chagrin office, which was where we’d seen him for each of the past two weeks. Twenty-five minutes later we arrive and the woman checking people in was very confused when I said why we were there. She made a quick phone call and then told me, “He’s listed here for surgery at 1:30 downtown.” Surgery? What do you mean, surgery? “That’s what it says in our system. Are you familiar with Rainbow Babies’ & Children’s Hospital on the main campus?” Huh. “Oh yes,” I say and leave in a huff, retracing our steps all the way back, past our house, down the hill, into the all-too-familiar parking garage.
By this time, Austin, exhausted from begging for food, had fallen asleep, so I carry my 37-pound boy in my arms to the pediatric sedation unit. The woman there got the same confused look on her face and, not seeing his name on the list, called over to Peed Surge. Yup, they were waiting for us.
Good thing I know my way around that hospital with my eyes closed. Down one elevator, through the halls, up another elevator, follow the blue butterfly stickers on the wall and finally, we found ourselves back in Pediatric Surgery, for the eleventh time in Austin’s short life.
They checked us in after a short wait and we had to go through the whole rigmarole (yes, that’s really how you spell that word — I just checked): medical history, medications, reactions to blood or anesthesia, etc etc. The orthopaedic surgeon explained apologetically that he isn’t allowed to administer sedation himself, each piece of the health care puzzle now so highly specialized that you have to go to ten different departments to get anything done. He was surprised his secrtary hadn’t explained it better, but I think maybe it was my own fault for assuming I was already an expert. It was still expected to be a minor procedure, propophol through the gas mask and quick removal of sutures. I felt sort of silly that we were even there, getting ready in pre-op, just to pull out some stitches! A far cry from the myraid other reasons we’ve been in that room.
And of course, being in that space, we bumped into Austin’s nurse practitioner (“What happened to Austin now?!”), the surgeon who did December’s kidney sparing surgery (“What are you doing here?”), the surgeon who did his first two surgeries three years ago, and eventually even his oncologist who was checking on another patient coming out of surgery (“Krissy. . . ? Are you guys okay?”).
And then the anesthesiologist showed up and was most concenred about those few bites of applesauce he’d had. I tried to excuse myself by explaining that I thought he was going not to surgery but to sedation, where you’re allowed to eat four hours prior, but she was not pleased. She wandered off to see if we could reschedule for 3, which I was dreading as Austin had been crying for food for the past hour and a half already. Eventually she conceded we could move ahead and do it, only after listing the rare but lousy things that could happen like applesauce coming up and getting stuck in his lungs, giving him pneumonia that would result in hospitalization. She thought the risk was negligible and I thought it sounded better than dealing with an increasingly starving pre-schooler for two more hours, so I signed the consent and finally, finally, it was time.
I donned my space suit and walked into the operating room with him, leaving only after he was knocked out, then wandered the halls until I had enough phone service to call Mark (“You’re where??”). Fifteen minutes later I was back in post-op, standing by his hospital crib, waiting for him to come to. Then another thirty minutes of recovery, complete with a popsicle and juice, before we were finally on our way.
No damage at all to the hand. The doctor even said he doesn’t need to see us for follow-up unless we have a concern (“You guys spend enough time in hospitals.” Do we ever!). Austin’s now free to swim and dig and grip and do all those other things that kids with two working hands do. And Mark has already taught him to bat as a lefty, so we’re all good. All good.
Austin has a Witness t-shirt. Long-sleeved, black with the Nike swoosh and those stark white capital letters. He’ll keep wearing it. He’s a witness after all. As are we all.
I’ve witnessed greatness and heroism and bravery many times over. Every time a teacher stays late to help that struggling child. Every time a nurse cries with a family. Every time a doctor takes a middle of the night call from scared parents. Every time someone gives a little more than they can afford. Every time someone makes the right choice instead of the easy choice.
I saw it when my lifelong friend lost his leg from the knee down and, instead of giving up and sitting in front of the TV, he became a triathlete. I see it every day when Austin wakes up and, even though he has a thousand reasons to hate the world and another thousand to fear the world, he chooses to love it instead.
I witness them everyday: Small bits of greatness. Quiet acts of heroism. Ordinary miracles. And you know what? So do you.
Let’s celebrate that.
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.
Things are going fairly well. As is so often the case in these situations, it’s the little things that are causing the most pain (literally). Austin was extremely irritated by the NG tube, which thankfully was removed this morning. His next complaint was his foley catheter, which when my brother was visiting, caused him pain just to think about. During rounds, the PICU docs agreed it could be removed but then needed approval by both the surgeons and the nephrologist (kidney doctor). So, after a few hours of calls back and forth, that too was finally removed. They are now measuring his diapers to record urine output, which has been slowly but steadily increasing. The other measures of kidney function look pretty good; one has risen but seems to be leveling off, as we’d hoped.
But now there’s something else bothering him. He’d been complaining all morning about his right eye. At first, I thought it was just gunky from being crusted shut but nothing seemed to ease his discomfort. I casually mentioned it to the PICU attending when she saw me sitting there with a warm washcloth held up to his face: “His right eye seems to hurt a bit,” and she stopped what she was doing and said, “What? His eye hurts? He must have an abrasion!”
I briefly imagined them whisking him off to eye specialists for yet another procedure but quickly learned it’s not uncommon to get an abrasion during surgery. I don’t really understand why especially because they tape his eyes shut the entire time (never knew that before either; they sure don’t do that on Grey’s). Anyway, all he needs is some Bacitracin and then they’ll tape it shut while it heals. Now he’ll have an eye patch too!
He hasn’t smiled yet but I am hoping that once the eye is taken care of and he gets the popsicle he’s been given permission to eat, he’ll grant us one of those beauties. We expect to move back to our room by the end of today which is great news. We’ll all be much happier there and he’ll be thrilled with the additional stars that have appeared in his sky over the past two days.
So now we keep moving slowly forward, healing physically and emotionally. We still feel generally positive about yesterday but also have that sense (yet again) that there is no one simple answer, no single magical procedure that is going to make it all okay. For twenty-seven months now, we’ve been awaiting the day when we can say, “All better” and have it ring true. We’ve said it a few times prematurely of course. With radiation looming on the horizon and the risks that accompany it (kidney failure, secondary cancers), I wonder if we’ll ever really reach the end of this journey.
But we carry on. And right now, all we really need is a smile.
If, by any chance, you’ve been waiting around for some news from today’s scans, well . . . imagine how we feel.
But we do finally have news and it’s mostly good. The “good” part is that it has not spread; there is no cancer in Austin’s lungs or liver. The “mostly” part is that the mass seems to have grown yet again (from two centimeters in diameter to almost three), although it’s unclear whether the size has actually changed or whether the view on a 3-dimensional CT scan is just different enough from a 2-dimensional ultrasound that it looks bigger. Ultimately (as I have been heartily assured by our docs) this doesn’t change our approach on Monday, and in fact it lets us know (yet again) that we are doing the right thing by moving ahead with this as quickly as we are.
Here’s the interesting thing though. The cystic lesion (the very thing we were watching via ultrasound when we found the current new solid lesion) seems to have been pushed out of place by the new lesion. They look like they’ve merged into one which might be why it’s now bigger. The doctors won’t be able to tell for sure until they actually open him up and are looking at these tumors head-on but it’s possible the solid one either grew inside the fluid one and burst out of it or maybe they’ve just been smooshed together.
All of this made me very nervous when I heard it (Wait, it’s moved, why would it do such a thing? Oh no, now it’s bigger — can we still spare the kidney? etc etc) but according to the surgeon, the plan remains. He even said that being slightly bigger is actually better because he’ll be better able to see it and manipulate it with his hands. Its increased size doesn’t necessarily mean they’ll have to remove any more of the kidney. Imagine that you made a pile of sand (the kidney tissue) and then stuck a small fist (tumor) in it, displacing the sand. If you stuck a larger fist (larger tumor) in it, and then eventually pulled it out, the sand that remained would be the same. That’s the hope with the kidney. They’ll be removing something that isn’t actually part of the kidney, hopefully leaving just as much kidney behind as they would have two weeks ago.
Anyway, I know that’s all a bunch of medical mumbo jumbo. Just know that my little man did a spectacular job in the hospital last night (without letting out even a peep when his IV was inserted) and all day today. He and Mark are still there, with hydration is set to be done by 9pm and then he’ll be home to sleep in his own bed.
Oh, but first (because the day hasn’t been long enough), I have to bundle Braedan up in his warmest pajamas and drag him out in 18-degree weather well past his bedtime on a school night to drive back down to the hospital and hand deliver Mark’s car keys, which, as we switched back and forth between each other’s cars during our multiple shifts on and off today, somehow ended up here at home while his car is there in the parking garage. Nice.
I find it sort of funny, or at least ironic, that all of us (you out there as well as me and Mark) are feeling such joy and relief after Monday’s meeting. It’s almost as if we think, “Oh thank God, that’s over with,” when in reality, whatever was inside Austin’s body last week is still there today. He still might have cancer. Or not.
We do feel good. Enormously relieved. Even though the facts didn’t change, even though no one looked at the slides and said, “Oh wait, now we know what it is,” even though everything remains the same, it sure doesn’t feel that way. Just to have the prospect of surgeries and dialysis no longer looming over our heads (for today, at least) is a huge gift.
But, as promised, here are the nitty gritty details we learned in our Monday conversation, all of which fed into our decision.
You may remember that we thought our next step would be to do a needle biopsy, even knowing it may not be successfully diagnostic. Well, that was an understatement. The doctors said it had about a ten percent chance of giving us any definitive answer. Because of the “thing’s” location and because of the fact that they’d be stabbing a fluid sack and trying to draw out cells from the solid portion inside it, they thought it was sort of a waste of time. Even if it is cancer, learning that from the biopsy is unlikely. And our actions moving forward wouldn’t be impacted by the results in a major way because those results would most likely have put us back where we are now. So it was deemed an unnecessary step to take.
We also discussed the possibility of doing an open surgical biopsy, where they begin a surgery but don’t decide whether to take out the mass, or take out the kidney or just sew him back up until they’re actually inside and can biopsy a section of the shadow. If the mass grows and we do decide to operate, this is what will automatically happen anyway. But to do that now would put him at great risk. Because he’s had so many surgeries (one kidney-sparing that removed four tumors plus three surgical biopsies on that particular kidney), there’s a ton of scar tissue and adhesions that have formed. For instance, one part of the kidney has sort of suctioned on to the spleen and any surgery could severe that currently harmless connection and make the spleen bleed out and need replacing. The kidney itself could fail due to excessive blood loss because of all of the scar tissue that would need to cut through to even take a look in there. So again, at this point, it is not worth it.
Another thing, and this one is promising, is that this shadow might be a urinoma. A little pocket of pee. When they raised this as a possibility, I exclaimed, “Oh, it must be that! A pocket of pee is just so Austin!” Because there is obviously urine in the kidney (apparently just floating around in there), when they did his main surgery, they might have sewed up some pee into a little ball, called a urinoma. Ha. How do you like that for modern medicine?
That’s about it. We’re scheduling an ultrasound for next week and just keeping our fingers crossed. And we feel good.
I know this is very last minute but, in preparation for our meeting with the dcotors tomorrow (or today, depending on when you’re reading this), I welcome your questions. Of course, we have a list of our own already and of course, we know a bit more about Wilms’ tumor and kidney dialysis and surgical resections than most of you (I hope!), but I’ve found over the last few weeks that it’s really useful to listen to the questions that others pose. The “what if’s” and “how about this . . .?” or “could they do such-and-such instead of such-and-such?” Sometimes we get caught up in our own way of thinking and our own set of fears or assumptions and we just need a different perspective.
So if you have a question or a suggestion or a scenario for treatment you think we should be considering, post it here (before 3pm on Monday). And wish us luck . . . .