Thank you all for your supportive comments an emails. It really meant a lot and I feel bad for leaving you hanging!
After reading all 270 abstracts (and all available articles–maybe 20) on pubmed, I started to understand more about IM. Honestly? I don’t think we have too much to worry about. The bottom line is that there were like 3 cases total that included children who presented with multiple tumors over the age of 2. So of 300 documented cases, there were about 2. IM is hard to diagnose, and therefore underreported, but I like those odds. And even in these late onset multiple cases, they were “easy” to treat with no visceral involvement. This is all very good news.
I shared my lit review and commentary with dr superstar. She loved it and asked me to send the electronic file so she can have her research asst get reprints for us. She’s also going to send them to the oncologist so that we all feel well informed going forward.
The toe is fabulously well now so the plan is to see superstar in about 3 months. In the meantime, we’ll see an oncologist on April 8th to discuss whether or not we need to go on a tiny tumor hunt (maybe ct scans of abdomen and/or head).
Until then, we’re just operating like everything is completely fine. And why the hell not.
No results yet. They ended up having to send the samples out to another lab (unclear why…). Dr. Superstar thinks results tomorrow but who the fuck knows. She also said that her conversations with colleagues and some review of the literature suggests that the difference between the two options is less dramatic than we originally discussed. The oncologist that she consulted feels that an abdominal CT scan is a good idea (I get the sense that she felt that it was not entirely necessary) and she planned to discuss his case with colleagues to review protocol details and determine if they should scan anything else at this time. Meanwhile, I’m so done with all of this.
Our 2 year old has an ear infection. This would be unremarkable except that he recently lost the tube in his left ear so that I had visual confirmation of an infection means that his ear drum ruptured. Not the worst thing that could happen but he’s had tubes twice already, adenoid removal, and a sinus surgery. If he needs tubes again it wouldn’t be the end of the world but I am NOT in a position to handle another chronically doctor-seeing child.
Oh, yes… the respite part.
I’m 37. This happened on Monday. I took the day off and spent it feeling sorry for myself at a lovely spa (thanks in large part to an extremely generous friend who sent a spot-on gift!) I followed that up with a little party with the boys, including a T-Rex cake chosen by the kid in the boot. (“Daddy! T-Rex is Mommy’s FAVORITE dinosaur! We have to get this one!”) The boys also gave me a hideous purse (I’m a purse girl) and I promptly returned it for something decidedly less hideous. It was a good, good day.
And tomorrow, Sister2 arrives from the Midwest. (I’m Sister 1… there is a Sister2, Sister3, Sister4, Brother1, and Brother2) Sister 3 lives here (but is moving back to Midwest in a few weeks because she is an idiot), so for 5 wonderful days I’ll have 2 of my 3 sisters here with me to hang out with the kids, cook gorgeous food, watch girlie movies and engage in general merriment and goofiness. (Sister4 is the merriest AND goofiest, though, and I really wish that she were coming, too.) I can’t wait.
I don’t have a lot of energy to write all of this tonight, but I feel like I need to document everything somewhere. Other than the growing pile of discharge forms, copay receipts, and appointment reminders on my desk.
The pathology report from Vanderbilt is in. There is one additional piece of data that we’re waiting for (a pretty significant one) but the information that we have confirms that it is not, in fact, a glomus tumor as everyone suspected. The cells are consistent with those found in infantile myofibromitosis, however, the tests that we’re waiting for will tell us whether or not the muscle markers are present (i.e., whether or not it originated in muscle tissue). If the muscle markers are NOT present, then it is infantile digital fibromitosis instead.
The difference is HUGE.
In the first case, we go hunting for additional tumors because there are two versions of myofibromitosis: the single occurrence and the multiple. We meet with an oncologist because oncologists have protocols for hunting for hard to find tumors. At minimum we do a CT scan of his abdomen and we continue to monitor him, particularly during periods of rapid growth (like adolescence). In the first case, he has a disease. For life.
In the second case, we wait and see. Fibromas have a tendency to spontaneously regress and then are reabsorbed by the body. They can recur (and often do) but that is pretty much it.We might not even need surgery.
I’m banking on the second case, not just because it is the more desirable option but because from everything I’ve read (and it isn’t much because there isn’t much available), it is just more consistent with his symptoms. Both are extremely rare, and neither fits our case particularly well. Onset for both, in nearly 90% of cases, is <2 y.o. (he’s 4). And, in both cases, there are fewer than 200 documented cases. Some of those are cases of infants who were born with myofibromatosis and were disfigured or died because of lesions on vital organs. Isn’t that lovely.
Dr. Superstar has been phenomenal throughout. Our conversation on Friday was so pleasant in spite of the (potentially) heartbreaking news. She was professional, but treated me like a smart mom who was worried and wanted information, not like a robot or a moron (I’ve had both from others along the way.) She has a friend who is a well-known pediatric oncologist. She was planning to discuss the case with her on Friday and to call me back on Monday to relay their conversation. We may meet with the oncologist at some point, too. Depending on what happens.
When I relayed the information to my husband, he lost it. He was so convinced that it was a glomus tumor all along that when the results were different, and scarier, he just couldn’t deal. My reaction was different. I had convinced myself that in spite of evidence to the contrary it was probably some rare form of cancer and we’d have to start treatment immediately. It wasn’t until last night that I actually started panicking.
In the interest of full disclosure I’ll also tell you that I am feeling particularly sorry for myself tonight because I must have some repeat bloodwork done and have to abstain from alcohol (?! and ibuprofen?!) for 2 weeks. And, wow, could I use a drink.
The pathology report came back inconclusive; they know what kinds of tissue they have at the most general level but don’t have a precise label for it. Nor do they know what caused it or what to expect from it in the future. Therefore our path forward is uncertain for another week or so as we await information from the House of pediatric soft tissue pathologists.
The one thing we do know, though? It is NOT CANCER.
We’ve been waiting so long, I’ve almost completely run out of emotion about this whole thing.
I’ll jump to the punch line and tell you that we haven’t heard anything yet. On Friday, they told us that the pathology reports weren’t yet in. Today, my conversation with Dr. Superstar’s assistant was a little weird. She basically told me that even if the reports were in she couldn’t share with with me anyway because that would have to come directly from the doctor. She promised to page her (Superstar is in clinic all day Mondays) and ask her to check in with pathology but we never heard from her. I’m not usually especially paranoid but I have to admit that this conversation made me start to wonder if there was news, and it is bad, and she wants to tell us in person.We have an appointment tomorrow at 2, so we’ll find out then, I guess.
It’s awful, I know. I know that staying positive is important but I’m feeling myself slip. Part of this is just due to the enormous amount of bullshit that we’ve endured over the past few days. Most of it minor, but it starts to add up. The worst was Sunday morning around 2am when I heard this stage whispered next to my head, “Mommy, I think I threw up!” Yes, in addition to the toe, the surgery, the boot… he spent 16 hours throwing up over the weekend. Wonderful mama son bonding time. He’s fine today, though must be a little queasy since he isn’t eating much. So far no one else has it. Next, I have been feeling shitty for about 6 weeks–major cedar allergies–and the congestion came back last week. I woke up this morning with pressure and pain in both ears, much worse in the left. Ibuprofen and sudafed all day but my friend talked me into stopping at a MinuteClinic on the way home. Sure enough, 1.5 ear infections (the right ear was on the verge, the left ear was “oooh.. that hurts!”) I’m now on amoxicillin. Just like the DOG who had to go to the vet last week because he started peeing all over the house and after screaming didnt work we suspected some kind of infection. Yes, a horrible UTI.
I’m not a person who lives in constant crisis. Really. But I do feel like I have increasing amounts of evidence suggesting that maybe I AM actually in constant crisis but I’m just in DENIAL.
This experience has been difficult for me personally for more than the obvious reasons. One issue that I’m dealing with is unwanted attention. I’ve shared the Toe saga along the way with a few coworkers–I’ve missed so much work for the million doctors’ appointments that it became sort of a running joke that we started our team meetings with a toe update. When things took a turn for the scarier, my supervisor shared the information with the rest of the management team. I started to get very sweet emails from people, and a few people stopped by my office to ask what the heck was going on. Our director, recently in remission from breast cancer, actually teared up when she asked for an update on Friday. She’s a sweet, sensitive soul anyway but she got really choked up when we were talking about the waiting. And I did, too. Although I’ve really felt supported by my colleagues and I’ve felt comforted by their words, I’m having a hard time with the whole telling and retelling and kindness and the pity, god the pity, directed at me.
More painful, though, is that I’ve had this exceptionally painful spiritual crisis along the way. The short version of my spiritual history is that I was raised extremely Catholic in a midwestern suburb where everyone was Catholic. Both of my sons were baptised as babies, mostly because my husband and I regard Catholicism as part of our ethnicity, our heritage, more than anything. We don’t go to church unless my parents are visiting and we don’t really talk to our children about god. We say a prayer at dinner when our 2 year old reminds us, but only because he thought it was SO COOL when we said prayers when my parents visited at Thanksgiving.
At this point, I can’t tell you what I actually believe because I just don’t know. I’ve decided to not worry about it for the moment and I was sailing along sort of blissfully avoiding all of it for the longest time. It was like being paroled in a way.
Until words like “cancer” and “amputation” entered the Toe Saga.
Last week, I cried at work. I’ve never cried at work before. I felt the weight of the possibilities hit me so hard that I couldn’t breathe so I ran to the bathroom and lost it. I heard myself say, “Please, god, don’t hold it against him that I don’t know what I believe.” It was positively absurd but exactly how I felt at the moment.
My mother sent water from Lourdes. She swears that my father’s best friend is alive today because of it (he has pancreatic cancer). I’ve called it the “special magic water” as I”m saying prayers over my baby and making the sign of the cross with it over his head and on his toe. But I don’t feel much of anything when I go through those motions. It is childish to expect some sort of dramatic reaction but I’m so focused on the emptiness that I feel that I start to wonder if I’m doing more harm than good. And then I start to wonder if my mom’s faith alone is enough to work some kind of miracle. And then I wonder why I think that SHE could bring about miracles but *I* can’t believe in anything.
I can’t talk to my son about how god will protect him and will help the doctor heal his toe because you know what? he has NO IDEA who or what god is. He has no concept of god. He knows of jesus as the little baby in the manger at christmas time. We have a book about baby jesus that my mother sent. To him it is just another christmas book. (I need to post something more coherent one day about how extremely difficult it is to make decisions that will shape your children’s spirituality when you are in the middle of wondering what you believe–even when you aren’t in crisis.)
And then… when people tell me that they are keeping my baby in their prayers? Or that their children are mentioning him when they say their prayers at night? Or that they lit a candle for him at church yesterday? I feel better. I feel genuine comfort. I feel almost hopeful. I feel a flicker of faith in something. and maybe it is faith in people, or faith in positive energy. It’s enough to keep me dousing him with magic water. It’s enough to keep me whispering prayers every time I feel overwhelmed with worry (in spite of the residual guilt it causes). And it’s enough to keep me hoping that maybe tomorrow will bring an answer that we can live with.
First, thanks to everyone for well wishes both here and in other virtual spaces. It meant more than you can imagine. (Oh, and I need to thank EmmaNadine for suggesting that we opt for the happy juice pre-op. Honestly, I don’t know how we would have done the separation without it. He was asking to go home even before we finished answering all of the med history questions (for the 85th time). Like most parents I”m not a big fan of extra medicine, but this was worth it. I wanted some, too!)
Things went well today, but not as well as they could have. Specifically, for a time it looked like we would have biopsy results immediately (they did some frozen cell samples during surgery) but the results were inconclusive so we’ll have to wait for the permanent samples. 2-3 days. This is actually faster than I expected to hear results but after suffering through an hour expecting to hear immediately, I’m disappointed.
Dr Superstar feels that it is a glomus tumor and when she gets confirmation, we’ll be going back next week for the second surgery to remove it (and much of the toe). In fact, the plan this morning was to go ahead and take the tumor out if they were able to confirm but since they weren’t, we decided to wait. There is still a chance that it could be infection and if it is, we won’t need a second surgery to amputate. We’re still hoping.
I’m exhausted. In part because we had to get up at 4 to be there by 6 but mostly because the experience was so stressful. I was very pleased with the staff at the hospital and from start to finish I felt like we were taken care of by people who knew what they were doing and genuinely wanted to take care of us (with one exception but that’s hardly worth mentioning.) But there is just nothing like sitting in a hospital waiting for your first baby boy to come out of surgery. Except sitting in a hospital waiting for your first baby boy to come out of surgery and learning that you might find out whether or not he has cancer in an hour, so you worry and shake and pace and even cry little during that hour and then they come out and tell you that they couldn’t tell but they’ll know in 2-3 days. I can only think of a few outcomes worse than that.
He has a boot. He hates it. He’s already trying to run with it on and banging it into things on purpose. We have to keep it on at minimum through Tuesday of next week. Should be a fun weekend.
Back to waiting.
I will not let this incident define my family. But for now… we’re all about the toe.
Surgical biopsy is scheduled for Wed at 9:30am. All good thoughts, positive energy, and prayers welcome both then and during the processing and revealing of results!!
Most recently discussed here.
Today, we met with a pediatric orthopedist at the Fantastically Awesome Children’s Hospital (FACH). But let me back up a minute.
Recall, the podiatrist couldn’t find a hospital that would let him operate on a child. In retrospect I’m sure this means that he hadn’t ever actually performed surgery on a child as young as my son. More and more it becomes clear that we were meant to move on and meet with someone more qualified to handle our situation. His read of the MRIs indicated that it was a particular kind of tumor that wasn’t anything scary and his description of what he would do about it (small incision, remove it, send it out for biopsy, move on with our lives) put us at ease. And prior to that, he read xrays and told us that there was nothing abnormal on them.
Turns out, he was wrong about a lot of things.
It took us almost 2 weeks to get an appointment with the doctor that we saw today(hereafter Dr. Superstar) When I first called, her assistant was difficult. She said that Dr. Superstar was in clinic all week and that she wouldn’t even have time to view the MRI until the following week. Then, and only then, would we know whether or not Dr. Superstar was even the right doctor for us. She’s a bone specialist and soft tissue tumors aren’t really her thing. When I asked for some guidance about whether or not Dr. Superstar was even an appropriate reviewer, she said that there was another doctor in the practice who might be a better fit, but we’d have to wait for him to review the films, too, so why not just start with Dr. Superstar. Fine, ok. She’d call me the following Wed.
On my way home that night, I called my pediatrician. It was after hours so I left a message laying it all on the line and telling her that I was tired of all of the runaround and that I wanted to start over but needed her help. She called me back that night and we had a long talk. She assured me that she felt that the orthopedist was the right call and that she had very positive experiences with the practice to which we were referred. She gave me the name of a pediatric podiatrist a nearby city, though, as a backup. We agreed that if I didn’t hear back soon, we’d move on. (Truly, she supported me enough to let me make the call.)
Wed came and went, and no call. I called at the end of the day and the asst hadn’t yet given the MRIs to Dr. Superstar and wasn’t sure whether or not there would be time to do it that day. At this point I lost my shit. I half-screamed at the wretched woman about how I had already waited a week, and at this point I didn’t even know if I was waiting on the RIGHT DOCTOR and that even though we were new to Dr. Superstar we had been working on this problem for over THREE MONTHS and that my son was in PAIN and if we didn’t make progress with Dr. Superstar, we needed to move on. After some back and forth, she was increasingly apologetic and defensive, she asked me to check in with her the next day.
I called the pediatric podiatrist on my way home, prepared to make the jump, but they needed my pediatrician to fax in a referral before I could make an appointment. I called the pediatrician and left a message requesting the referral and planned to call back the next morning.
Much to my surprise, Dr. Superstar’s asst called me at 8:05 the next morning. Dr. Superstar had reviewed the MRIs the night before and wanted to see my son as soon as possible. We scrambled to get referrals in place and doctor notes faxed and made an appt for the following Tuesday. That would be today.
Her sudden urgency was simultaneously a relief and stress-inducing in its own right. Frankly, that she wanted to seem him ASAP made me start to wonder what the hell she saw on the MRI.
A quick sidenote about her assistant… this woman seems to have made it her mission in life to act as though she is the gatekeeper to God. Really, she treated me as though I should be honored to be meeting with Dr. Superstar. And yeah, I read her vitae. She’s impressive. She’s hard to get an appt with for a reason. But give me a goddamn break. (I should be fair and admit that for me, her English accent didn’t help things. She came across more smug than she might have if she sounded like everyone else around here.)
For all of the bullshit from the assistant, Dr. Superstar herself was AWESOME. She was so smart and articulate but somehow also down to earth. Her explanations were technical and complete and not remotely condescending. She reviewed the MRI films with me and let me study them and point at things and ask real questions.It was obvious that she has been an educator her whole life–and a very good one. She took a few new xrays and showed how the toe has changed since December. She also showed me what the podiatrist missed on the xray. And on the MRI. At one point she brought me a medical textbook so that I could read about what she and the radiologist suspected it to be. (Not a “So you think you have a tumor?” pamphlet. A medical text.) Then, she told me that her buddy wrote the book and that she (the buddy) was going to consult on our case. Wow.
It became clear early on why she took our case. Dr. Dipshit the Podiatrist missed on the xray that the tumor had already started to erode the bone back in December. The MRI made it even more clear that the distal phalanx on that toe was misshapen. The xrays that Dr. Superstar took today were even clearer.
Because there are several things that look and act similarly (deep infection, glomus tumor, other kinds of tumors, etc.) she wants more data. Next week, she will perform a surgical biopsy (general anesthesia, take tissue samples, slice and dice and send some to pathology here and some off to her textbook doc pal who is Chief at a Super Fancy Hospital). While he is under they will also take some blood and have it sent off for analysis, too.
The data will tell us if it is (a) an infection, (b) a glomus tumor (noncancerous), (c) another type of tumor (noncancerous), or (d) a malignancy.
In case a, the next step after figuring out what will kill it is to go in, clean it out, treat and monitor. He’d be up and around fast assuming that the infection is treatable (and most are.)
In cases b and c he will have surgery to remove the tumor and surrounding tissue (to prevent it from coming back and destroying more healthy cells). In this case “surrounding tissue” is most of his toe.
I asked her to clarify, and yes, that is EXACTLY what she said. The damaged distal phalanx will need to be removed, along with the plate underneath. That means that there will likely only be about 1/4 to 1/2 an inch left of that toe when she’s finished.
In the case of d, well… we didn’t talk much about d both because it was too horrifying and because it is highly unlikely. From the textbook that she let me read during hte xtrays, I learned that up to the date of publication of that book there had never been a documented pediatric case of a glomangiosarcoma. That doesn’t mean that there hasn’t been one since, nor does it mean that other types of malignant tumors aren’t possible, but in all likelihood this isn’t our tumor. Dr. Superstar said that if it were, we would examine lungs and other tissues for signs (hence the bloodwork during this procedure–to look for red flags) and go from there. We didn’t even discuss what would have to be removed if it were actually cancer.
Next week, we’ll have the biopsy surgery so that she can get what she needs to learn what it is and then we’ll make a plan.
I’m stuck in this place where I am sad and scared, but neither especially hopeful or especially pessimistic. I just feel scared. I don’t want him to have a bone infection, or to lose most of his toe, or to have fucking cancer. I don’t want ANY OF THIS. I never, ever, dreamed that we would be here when this whole thing started 3 months ago. I thought it would be MRSA or that they would have to give him some really strong IV antibiotics. But surgery? and more than that–LOSING THE TOE?
I trust Dr. Superstar. I do. I trust that we’ll get the data that we need to do what has to be done. And when I look back on this, with my baby in my arms, I know I won’t care at ALL about 9.25 toes instead of 10.
Still, I really can’t wrap my head around this.
I joined a new gym.
Aww… crap. I told you. Now it’s out there.
The thing is, I haven’t been serious about working out since before the kids (wow, has it really been that long?!) and I’m so over beating myself up about it. The best way to combat that–I’ll just fucking do it.
I’m setting my alarm for 5 so that I can go in the morning. I already have a backup plan (go after the kids are in bed), but morning would be better. The gym is 24/7 so I have zero excuses, particularly while my husband is in town.
Crap. Crap. Crap.