A week after I posted that story we got a call from our ENT (Ear,Nose,&Throat doc for the unversed) saying that the pathology report was in and that it wasn't clarifying what the problem was, as they had expected it to. In fact, it was making the picture a whole lot cloudier. The tissue that they got out of the "mass" was mostly necrotic (a disturbing word anywhere, but when applied to a two-year-old it sounds downright diabolical) so the doctors still had no indication WHAT the mass was. They were pretty confident that it wasn't cancerous, but they couldn't rule it out 100% with the information they had. The doctor felt that it was probably an infected lymph node and that removing it via surgery would be the best option. Christmas was coming up, so "could do it in a couple weeks if we want to wait until after the holidays." Daddy-007 and I made a quick phone call to an allergist doctor friend of ours who's medically-reasoned response was "these infections happen. It is a good sign that there is necrotic tissue because it shows that the body is killing off the infection- it will go away in time. It will be harder on your son's body to go through a surgery than to let it go." We absolutely adore and respect this friend, he is an amazing doctor, he has helped us with our two asthmatic sons and all of our allergy-affected kids. (Did I mention that we totally and completely LOVE him, his wife and his family??) So, his saying that made it even MORE difficult that Daddy-007's and MY gut reaction was "Get that fucking THING OUT of our son's body immediately!" We have had enough loved ones die of cancer that there is a not completely unfounded concern about any strange "lumps" or enlarged lymph nodes and the thought of our son walking around with one was too much to bear.
We struggled for a few moments and then told the doc we wanted the surgery. Not in a couple weeks but as soon as he could schedule it. We were at the doctor's on Wednesday 12/17 and the surgery was schedule for Monday morning.
Monday morning came and the surgery went smoothly. The Animal was a dream about the whole thing. It was early in the morning, we had to be there at 6:30 a.m., so the whole thing was over by 11 a.m. The doctor called me in for a consultation after the surgery and said that the surgery went really well. The lump was a cyst and it popped right out. The main concern with an infection is that if it has spread, the doctor will find all kinds of infected tissue around the node or cyst and it is a mess to get it out. That wan't the case here at all: there was no evidence of any further infection. They could now send the whole mass off to pathology for testing and we could finally find out what was causing the infection.
We wait. Then we get a call at about 6pm on Dec. 23rd from the doctor.... "Well, it turns out that is WAS a lymph node. And the pathologist, after looking at the sample for a full hour was only able to see TWO mycobacterium." He continued, "Mycobacterium are notoriously difficult to find and even more difficult to identify, so we need to send the node off to a laboratory in Seattle to get a PCR test run on it that will isolate and identify the mycobacterium so we can rule out TB." Huh? Tuberculosis just seemed so ODD.... I mean, where would he get it? He didn't have a nursemaid with it, coughing and rocking him to sleep every night, for crying out loud.... The teachers and other students at his Montessori school certainly didn't have it. Didn't there have to be long-term exposure to get that?
If you are a hypochodriac, please skip this section: It turns out that TB is in the environment and a lot people have it in their system somewhere and never even know it. So, it was possible that just this lymph node had TB. OK. I hope not. But it's better than the other well-known mycobacterium, Leprosy. The problem with TB is that it takes uber-antibiotics to knock it out, and you have to take these antibiotics for 6 months to a YEAR. (I don't have a great history with taking medication regularly. I'm not saying that the Animal was an accident, but I will say that I hopelessly messed up the pill in the two weeks before conception. Let's just say he was a welcome surprise. :)
So, we have been waiting these weeks to get that test result back... and it finally came in a few days ago. The infection ended up being one of the "Common Atypical Mycobactium" (how's that for an oxymoron) known as Avium. It is an unusual infection, but not unheard of. Can happen after exposure to farm animals... We hadn't been, but OK, if you say so. .... The best way to treat this kind of infection: is to CUT IT OUT. So, we had done the best thing by already having it taken out. Phew! And that is, really, the only treatment. We just need to keep an eye on him for any more lumps or bumps and follow up with the doc in another month or so.
And this is the part of the story where it becomes clear that it is great to have a specialist in microbiology in your family.
I got this email from my mom yesterday:
re:mycobacterium avium complex
I’ve been reading about cervical lymphadenitis due to MAC and it seems innocuous enough if the lymph node was removed. This seems to be a disease of small children with a median age of three years. Interestingly, it said that there will usually be a history of a splinter or needle puncture wound. Mycobacterium loves water and wet environments, so it would seem that the splinters on the dock at the Lake may have introduced the bacteria into the Animal. Removal of the node is the treatment of choice.
So, I'm thinking about this and then realize that I know EXACTLY where this infection came from. The Animal has gotten tons of splinters from the dock, but that is NOT the puncture wound that I was concerned with.... You see, we had this totally bizarre thing happen when the Animal was between 18 months and 2 y.o....
He got this bump on his jaw line that looked like a pimple. And then it got bigger over the course of a day or two.... and I was feeling it and it was odd and kind of long-feeling under his skin. Then it started to look like it was getting pretty big and ready to pop, so being a natural born picker I gave it a squeeze. Imagine my shock and horror when a feather came shooting out of the little abcess!!! A FEATHER, people! It was like a scene in a movie when a person suddenly pulls an egg out of their mouth (Was that in the Witches of Eastwick? Or Thinner?). So weird, so unexpected, so.... not right. I mean it wasn't like just a piece of a feather, it was an about an inch-long feather! It came shooting out like an arrow! It ended up healing just fine, but I told our family doctor about it to see if he had ever heard of such a thing. "Nope."
So, where does a child get an extremely unusual Mycobacterium Avium infection from? A feather puncture wound, I am guessing. The feather actually peirced his skin just a couple inches away from where the infected lymp node developed! And when queried about the likelihood of mycobacterium living on a feather from a pillowcase that my son slept on, my mom told me that these mycobacterium can live for thousands of years-- they've been found in Egyptian tombs-- so yes, that is most likely where it came from.
So, months later.... the mystery is finally solved. Sorry it took so long to go through the details, but it is what it is. :) And in this case, it is all good. (At least it is now!) Hooray!