is what Joseph looked like the day before his official diagnosis, dressed
as Han Solo for Nate's 7th birthday party. His right eyelid is swollen
and droopy and his eye has been pushed down so far by the tumor that he
can't focus, so he just keeps it closed and goes on playing.
March of 1996-- Joseph is a sweet, bright, emotionally intense 4 and 3/4 year old. He goes to nursery school 5 mornings a week and hangs out with a sitter a couple of afternoons a week while Dad works and Mom grinds away on her dissertation. He taught himself to read right out of the blue just after his third birthday, in whole words and sentences, and at four can keep himself busy for hours with books and computer games. He was diagnosed with asthma and a few allergies the previous fall, but by spring is doing very well with the help of his inhalers, and has lots of energy. I first have an inkling that he has another medical problem when I return from a research trip to the National Archives in late March and am greeted at the jetway by a little boy with a puffy eye. I 'm concerned enough about the swelling that I call the pediatrician's office, and on their advice begin giving him doses of Benadryl. I take him in a couple of days later, on Good Friday, but after examining him thoroughly the doctor says that he can't find anything significant to be causing the swelling, attributes it to allergies, and prescribes more Benadryl. In retrospect, I realize that the doses of Benadryl I'd given Joseph at home must have retarded the swelling enough so that the pediatrician couldn't see the significant swelling I had been seeing at home. I'll never forget his words, "There's no infection, no tumor. . ."
April 1996--The bumpy road to diagnosis.
Over the next week, the swelling continues to worsen, so I call the doctor's office again. The nurse tells me to go pick up a certain brand of eye drops from the pharmacy and administer them, and keep up the Benadryl. Pesky allergies. It is beginning to be obvious that it just involves the right eye, so that's what I continue to treat. It doesn't make sense to me that allergies would only affect one eye, but each time I call, I get the same nurse, who resists my attempts to get back in to see the doctor. "He's already seen him for this," she tells me. The teachers at the nursery school begin to quiz me: "Has a doctor seen this?" Yes, I say, we're treating it, it's allergies, they don't want me to bring him in right now.
Early the following week, Joseph starts coming down the stairs in the morning with his right eye closed, carefully holding the stair rail. "Why do you have your eye closed?" I ask him. "Because I see two of every one thing," he replies. By noon most days the swelling abates sufficiently so that he can open his eye somewhat and can see more normally. More Benadryl, more eye drops. Still, I'm worried enough to call again. Kathy the nurse is beginning to get pretty terse with me, dismissive when I tell her that he's very clearly describing double vision. "He's already been seen for this!" I try to do an end run around her, asking the receptionist at various times to leave a message for the doctor to call me--I've always felt a good rapport with him and I desperately want to speak to him personally. But it's always Kathy who calls back, telling me there's nothing more the doctor can do for his "allergies." By now the nursery school teachers are frowning and clucking their tongues, and I feel really trapped. I'm either a pain in the butt mom or a derelict mom, take your pick. I can't get the doctor to look at him again, I tell them, and smile and shrug and back out of the room.
The weekend of April 20th, David has a psychologists' conference at a resort hotel an hour from home, so the boys and I decide to join him and be pool rats while he attends meetings. By now Joseph looks very strange, and he's lethargic from all the Benadryl, but we spend Friday night to Sunday morning splashing around and watching cartoons and eating pizza. Older kids in the pool actively avoid Joseph because his face is so deformed. He can't or won't open his right eye at all--we're not sure which. I make the decision after the first night to give up on all the eye drops and Benadryl because it's not doing any good and I'm tired of doping him up. By Monday morning the change is shocking. Without the medicine masking the symptoms, the swelling around his eye is huge and he looks bizarre. I'm desperate, and finally get a lucky break. I wait until 8:30 exactly, the moment every Mom knows that the doctor's receptionist retrieves the phones from their weekend hiatus. And hallelujah, I get the triage nurse. When I describe his symptoms, especially the double vision, I can hear her sit up and take notice. She calls me back to tell me they're referring him straight to a pediatric opthalmologist, whose office will call with an appointment time. Yippee!
So I sit at home and I wait. And wait. I wait until the end of the work day. I go right back to waiting on Tuesday morning, but by mid-morning, I'm crazed. Joseph and I have to go off for kindergarten orientation in the afternoon. The triage nurse had mentioned the name of the opthalmologist, so I phone his office to find out why they haven't called me. I get the receptionist who tells me that yes, they have a referral, and that Joseph can have an appointment sometime in mid-June. When I begin to balk and sputter, she informs me that they care for patients with serious problems there and that a child with allergies does not warrant an immediate appointment. I finally lose it. I inform her that this could NOT be allergies and I describe his face to her. I tell her that I have been put off for a long time and that I feel terrible that he hasn't been seen before now and that he has to be seen as soon as possible! She cuts me off curtly and hangs up. When she calls back a short time later, she informs me that we will be allowed to come in at 1 PM the next day, right after they get back from lunch, and that "someone" will take a quick look at him.
Joseph enjoys his visit to kindergarten, where teachers observe his play and make notes on his physcial, intellectual and social abilities (or lack thereof), give him hearing tests and take his picture to be placed in a folder for his future teacher to see (I've never asked to see the photo of Joseph from that day; it was a head shot and must have looked freakish to his kindergarten teacher in retrospect).
Wednesday-- Run Over By A Truck.
I leave my carrel on campus late in the morning, and on my way to the car I walk past something I've never seen before, a fraternity fundraiser for childhood cancer research set up on the library mall. I drive to nursery school, pick Joseph up ("yes, he's seeing an opthalmologist this afternoon, thanks for asking") and take him home so we can have lunch together and wait for Michelle the sitter to arrive. If "someone" is going to see him for just a few minutes, there's no reason not to bring Michelle along so I can drop the two of them back at the house afterward and head straight back to work on campus. We arrive in the doctor's office, which is very quiet at the end of this apparently sacred lunch hour. A graying man walks through the waiting room and looks at Joseph with surprise and interest as he heads back toward the treatment rooms. The doctor maybe? Yep. Joseph's called in pretty quickly after that. The doctor takes a thorough family history and starts to examine Joseph with the standard series of tests. His vision is 20-20. He can see colors well. But the doctor seems increasingly rattled as he goes through a variety of pictures which Joseph does not seem to be able to see. I told ya' doc, he's describing double vision, he can't focus on those little doggies and dinosaurs and dots that you need depth perception to see. He measures and figures and has us hang out in the waiting room while dilation drops go to work. Our 15 minutes stretch out to 2 hours, and longer. Michelle reads to Joseph and plays with him, I'm just so relieved that someone is finally listening to me. At the end of all the tests, the doctor asks me to come back into his office alone to speak with him. He tells me that Joseph has some kind of "growth" pressing out on his eyeball from above and behind. I look down at the notes he has in front of him and I see the word "TUMOR." He tells me that Joseph will need further testing, in the form of an MRI to tell what the growth is, and gives me a list of possibilities at the bottom of which (and "highly unlikely") is a cancerous tumor. Oddly, he seems most interested in knowing what David's schedule is, at what time he will be able to call him and talk to him, answer his questions and give him all this information, as if I'm not capable of doing it. It is a very strange performance, but I give him the information to the best of my knowledge, and go off to the laboratory on another floor so that Joseph may give a blood sample. On the way to the lab, I stop off and call a neighbor to get Nate at the bus stop and call David's office and tell them to have him cancel clients and leave work so he can pick up Nate and meet me at home. It takes Michelle and me and three very bitchy, unsympathetic women in white (one of whom keeps screaming at Joseph "now lay still or I'll stick you with this needle!") to hold my thrashing, raging boy down to draw the blood, and then we all three stagger out to the car which I somehow manage to maneuver home.
Ever have a pediatrician show up at your door? Outside of an episode of the Donna Reed Show, who of us has ever seen such a thing? It's quite an experience. Mine has his camera in his hand. And a lot of explanations for the behavior of his nurse, none of which contain the simple phrase "I'm sorry." Since he heard from the opthalmologist the day before, he's been going over all the records; I can tell, because he's quoting Kathy's version of our telephone calls back to me, or at least the ones she's bothered to write down. Nice of him to drop by on his day off to do something so considerate as cover his ass. He examines Joseph's eye and chats with him, and takes front and side pictures. Has the opthalmologist talked to us about what he thinks this might be? He tells me about the doctor who will do the biopsy now being proposed over at the University Children's Hospital, and how nice a certain pediatric oncologist is that he's recommended to the optho "just in case." "Hopefully we won't have to meet her," I say, and then I see the look on his face. An "ooh, they really haven't told her what they think this is" look. Shee-yit. I've had a nagging feeling that the opthalmologist was feeding us some amount of crap with his cheerful listing of all the non-malignant things it "might be," but of course I've wanted to believe it might be something relatively innocuous. Now here is the pediatrician making it very clear that he knows we are headed off to meet an oncologist, and he thinks I'm in denial or something. Later I realize that we've been led astray with false hopes by the opthalmologist who has the worst trait a doctor can possess; a selfish, fearful unwillingness to give people bad news and see them in terror. It's just another way of saying that he doesn't have enough respect for them to tell them the truth they need to hear so that they can start to cope and take action. I'd dealt with a couple of doctors like that when my father was dying of prostate cancer, and I think they have no business caring for live, breathing people. Hie your ass off to the pathology lab, where the stained cells won't care that you're a cowardly, lying prick, but keep your hands off of whole human beings. Anyway, the pediatrician proves he's no better, because as soon as he sees that I haven't been told what they are all pretty sure of, he has a choice to make, and he blows it. Sitting there in the quiet of my own living room, he doesn't tell me, either, and he loses my trust forever.
Friday-- Mom's research skills work a little too well.
Joseph and I spend a short morning together in nursery school, and then have some playtime at home. Daddy comes home from work to escort us both to the free-standing MRI center. The gentle young woman anesthesiologist finally has to wrestle Joseph to get the mask over his mouth, but then he's out fast. Later, as he comes out of sedation, the anesthesiologist and the nurse come in to pet the sleepy boy's hair and make friendly small talk. Has anyone discussed with us what they think this might be that the radiologist will be looking for? When we say, well, the doctor has mentioned a variety of things, they say, "Ahh," and look at each other. Oh God, they've seen it in living color, and they can't tell us. I hate this!! I give Joseph his first Beanie Baby to cheer him up as he comes to, and it works very well. Little do I know how many of these he'll be getting in the next few weeks.
At home that night, I call Colleen, our dear friend who has graduated from being our baby sitter during her 4 years of college to her current status as second year medical student. I tell her I need to do some research, I list his symptoms, tell her what the optho said and ask about tumors in the eye area. She opens her cancer book and under orbital tumors finds a word, a cancer, I've never heard of before. OK, she says, this is the most common orbital tumor in children, it causes ptosis and proptosis (which she kindly stops to define for me, as swelling, drooping and bulging) hits kids most commonly between the ages of 2 and 6, is more common in boys than in girls, and is highly malignant. As she describes its symptoms, she is literally describing Joseph's face. She spells the word out for me, and I still have the piece of paper on which I took those notes, on which I first wrote the word "rhabdomyosarcoma."
I hit the World Wide Web with my new word, and within a few hours I have read an enormous amount of information on rhabdomyosarcoma. NCI patients' statements and physicians' statements, abstracts of articles, descriptions of patients and treatments and even some pathology slides of the beast. I make myself read every word of it, too, so by the end of the night I have a pretty good idea of how it is staged, how and where it can spread, what the preferred methods of treatment are and what the expected mortality rates are. Surgery, chemotherapy, radiation are just so many words until someone can tell us for sure what this monster is, but at least I'm starting to feel like I'm gaining some foothold in understanding what we may face. Still, please let this all be for nothing, just a big sac of fluid or some blood vessels gone wild or some unspeakably bad dream.
The opthalmologist continues to call two or three times a day to keep us posted on his attempts to schedule a biopsy at the UW; looks like it won't be until Monday. It seems very surreal that he calls our house numerous times each day, but he won't tell us anything meaningful. He asks questions, but gives us no real information other than that the radiologist who read the MRI says that the "growth" is very vascular. David and I decide that we somehow have to go on with real life until Monday, so we foist the boys off on a friend for a couple of hours, and do the last frenzied preparations for Nate's birthday party the next day. We're in something of a dream state, sensing that this is precious time and that we should make the most of it. We scavenge the appliance store dumpsters for boxes, and come home with van loads of cardboard; refrigerator boxes, boxes from stoves, washers, dryers. We assemble them into a huge crawl-through maze in the backyard, with false passageways, doors, windows and escape hatches; Space Station 7, for Nate's 7th birthday.
Sunday--A Party in Purgatory.
9 boys run and scream through the place in space-oriented costumes, gobbling up the R2-D2 cake I somehow managed to decorate the night before and playing all the games we organized. I'm trotting around in my Lieutenant Uhura dress, organizing activities, trying not to make eye contact with any of the grown-ups. Before I can give out the treat bags and send the mob home, the opthalmologist calls again and tells us to get Joseph down to the urgent care clinic lab for a chest x-ray, because they want to make sure his asthma isn't acting up before they sedate him to do the biopsy the next day. He seems amazed that we are carrying on normal life, are in the middle of a birthday party given what we're facing, but since he's the one who's keeping the truth from us, he has no choice but to stop himself short, and just says please go over there as soon as you can. We change out of our costumes and get to the nearly-deserted clinic, and at the lab check-in desk I find no one. I see Joseph's paperwork sitting right on top, though, and two Post-its attached, plain as day, "R/O Metastases." So we're here checking to see if his asthma is flaring up, eh doc? I go back to where David is sitting. In your paperwork, "R/O" means what? "Rule out," he says. And that's how I found out that Joseph had cancer. Not from a concerned doctor sitting down with me to explain, but from bits and pieces left lying around by people who were too afraid to tell us to our faces. The MRI has told them what it is, but still, neither doctor has the decency to tell us. Their lack of intestinal fortitude ultimately means that we are standing here alone, left to deal with the truth and our fears all by ourselves. This is the moment that we know we are sailing this ship on our own. It's strangely empowering to know we've come to the correct conclusion about his illness all on our own, but also horrifying to be all alone with that knowledge. Now it's just a matter of waiting to see when it will be confirmed and which one of the doctors will have the guts to finally tell us.
[And you know what? If I ever see that opthalmologist's face again (and I never have, but hey, this isn't that big a town) I'll flatten it. Guess what doc, you can't make chicken shit into chicken salad, no matter how much mayonnaise you use. Avoiding giving us the truth and letting us find out the way we did was cruel, but hey, you didn't have to see what it did to us, so I guess your day was made a little easier. Thanks a lot.]
The tech comes up to us, smiling: Has anyone discussed a diagnosis with us? Again, I watch her keenly and say no, and she says "Oh" and quickly turns away to take Joseph in for his chest x-rays. I'm already getting used to people avoiding eye contact with us in this medical nightmare. What will it be like when we go to the hospital tomorrow and face the whole den of lions?
Monday, April 29th, 1996--Our sweetie starts his ordeal.
Nate's 7th birthday, and I even make 24 pretty cupcakes to send to school with him. Autopilot is a wonderful thing. Too bad it's the last attention the poor little guy will get for several months. Joseph and I spend what will be his last morning at nursery school together, skipping snack because the biopsy is scheduled for later in the day, and you can't eat for a few hours before sedation. We make butterflies out of coffee filters, clothes pins and pipe cleaners, dabbing them with watercolors to give them a wash of pastel. We make caterpillars from egg cartons and read stories and play with trucks in the sand.
Dr. Saynothing hasn't even told us that the biopsy will require an overnight stay at the hospital, so we show up at the UW doctor's office at noon with no bag packed, nothing prepared, and David's parents won't arrive for a few hours to stay with Nate. David and I are embarassed to be so unprepared. Everyone else in the known universe has been informed that we're in for a long haul, apparently, except us. Because we've been given no real information, we have no way to know what to prepare for, either physically or emotionally. Again we hear, "Has anyone discussed a diagnosis with you?" and again we watch them turn away with transparent nervousness when we say no. Arrrrgh! Haul these jokers to Vegas and make 'em play with their own money, because maybe at least they'll learn to put on a decent poker face.
We keep on our cheerful faces so Joseph won't be frightened, entertaining him, trotting him from eye doctor to eye doctor through his pre-biopsy check-ups, where they liberally give him stickers and let him push the buttons to zoom himself up and down in the exam chairs. Finally, the head doc shows us the MRIs, and we get to see the monster in Joseph's head. It's a creepy top-down view, and you can see a big white blob behind his right eyeball, pushing it much farther out and down than the left one. Still no use of the word "cancer," though. He explains how he'll do the biopsy, cutting across the width of the whole eyelid to retrieve a bit of the mass, leaving packing and stitches that will make the eye look puffy and scary for a few days, but which will retreat into invisibility within a few months.
At one point, Joseph is being examined by an opthalmology resident and David has gone out of the room to line up family arrangements, when the resident begins to talk about the "tumor" (someone has finally said it!). One word-- "rhabdomyosarcoma?"-- comes out of my mouth. Yes, she says, surprised that I know the word, and irritated, because she knows that no one has yet sat down to tell us. I tell her how we went out and found it on our own. I don't remember her exact response, but I know that she complained about the politics of the situation, and the unwillingness of doctors to be responsible for handing out difficult information. Still, she's nervous that the higher-ups will find out that she's confirmed our suspicions, and asks me not to tell them. No problem.
We get directions to take Joseph over to the hospital, and off we go. He's not been allowed to eat or drink all day, but lots of attention is keeping him pretty happy. When we get to the 4th floor Children's Hospital, we're placed in a room across from the nurse's station to wait for Joseph to be called down for sedation. The O.R. is overbooked, so the biopsy gets delayed, and delayed again, and the evening stretches on. We try distraction, but there's not much to do. We get our hands on a video game machine, but no one knows how to hook it up. Joseph, with no food since early morning, grows tired and frustrated and crabby, begging for a drink. Finally at 9 PM the opthalmologist who is to do the biopsy comes to answer our final questions and bring Joseph down for the procedure that had been scheduled at 5. By this time, our boy has become really frightened of this place, and rages and screams and cries when we try to take him down the hall to the elevator. David and I wrestle him the best we can all the way to the O.R., but he's fighting really hard, and gives us bruises and scratches that we'll be amazed to find the next day. As we struggle with him down the hall, trying to reassure him and subdue him at the same time, I look up and I'm surprised to see that the opthalmologist has tears in his eyes. I find myself saying to him "It's OK, this is a good thing! This kid is tough as nails! I'm glad he's a fighter, because he won't let anything take him without a fight!!" As I say it, I realize that it's true. This is not a kid who'll go off as a sheep to the slaughter, and I'm glad to see him screaming it to the whole world.
Once we've seen Joseph through the induction of sedation, we're sent back up to the room to wait. It's a creepy room, stripped of everything except the bed. When we ask why there's no phone, someone mentions in passing that this room is sometimes used for teens who may be suicidal, so nothing is left in the room that might be used to hurt self or others. And sure enough, I find small spatters of blood on the wall next to and above the bed. As I pace back and forth and wait for the nurses to dig up a telephone, I keep wetting paper towels and scrubbing the blood spots away. I wander into the peach-painted hallways and watch the kids and nurses go by. At the end of the hall is a unit of rooms that you can see through glass doors. It's labelled "Pediatric Hematology/Oncology F4/P4." Just looking at those doors gives me cold chills. A couple of times I slip back into the room and close the door and scream and cry and slam myself into the bathroom door, kicking the bed and the walls. Maybe that's why there's not more stuff in this stupid room, maybe this is the room where they put the families of kids in surgery so their psycho moms can't destroy too much. The nurses eventually find a chair and a phone for the bare room, and I call my mom and my sister to let them know he's in surgery and that we think our suspicions about the cancer will be confirmed.
As the time wears on, we turn the fluorescent lights off and sit in the quiet with the room door open a crack. The opthalmologist slips his head in and tells us that the biopsy has finished, and that once Joseph is cleaned up and in recovery, one of us can go to be with him as he wakes up. He brings someone with him into the room, a shorter man with graying hair. He has a sympathetic smile and a gentle, warm voice, standing there in the darkened room. Oh God, they've sent us a shrink. "This is Dr. Paul Sondel," he tells us, "he's the pediatric oncologist on call here this week." Ugh, there's that feeling in the pit of my stomach again. Dr. Sondel addresses us; "Has anyone discussed a diagnosis with you?" Not another one! "We think it's rhabdomyosarcoma," I say, looking right at him. His eyebrows rise up, but he doesn't avert his gaze. That's what we think it is, he says and nods.
I don't remember much after that, except that Dr. Sondel tells us that he is Joseph's doctor now and he will be responsible for helping us to get information and make decisions. He inquires gently into our personal lives, trying to find out about our family situation, our level of education and understanding. We tell him our worries about the insurance, and he assures us that now that there's a diagnosis of pediatric cancer, the insurance company probably won't harrass us as they've been doing over the tests and the biopsy. I find myself telling Dr. Sondel about the painful experience of finding out about Joseph's cancer on our own, and how terrifying it has been to feel that we weren't getting information about what was happening or what to expect. Both David and I tell him how desperately important it is for us to be told the truth about everything, and he promises us he will do that. Always. And as the months go by, he will go on to keep that promise, time and again, with as much detail and clarification as we need, helping us through some of the most terrifying and difficult days of our lives and earning our eternal admiration and gratitude.
Eventually the nurses ready a room for Joseph, and we pass through those fearsome doors for the first time, to spend the first of many nights with our little Boo on the oncology unit.