W Medical situation: Summary/Catch-up post

Some folks know and some folks don’t, and there has been a lot of rapidly changing and ambiguous info that has gotten confusing, so if you know my son William and want the medical situation explained in a concise, clear way, here it is.

If not, go look at cool animal memes or at today’s update that is about feelings and friends, not cells and procedures! Otherwise, here’s the summary:

• W’s knee has always hurt off and on, and it worsened through the past year. After one really bad night, an X-ray showed an unidentified lesion on it where bone cells are growing. A mass/blob/spot of some kind, maybe a tumor or cyst, possibly cancer, maybe an infection.
• We went to Hershey Children’s the next day for an MRI (with equipment of a type that is unavailable in our rural/college town). Two weeks in the hospital and two bone biopsies later (one needle, one open), he was released with a femur minus one chunk, some hefty antibiotics, crutches, and a wait for results and for the femur to heal.
• it’s none of the usual, most common things they see all the time. So, not an obvious Ewing’s sarcoma or an obvious typical benign bone tumor.
• Based on a needle biopsy, they told us “it’s not cancer” because those common things were ruled out and SOME of the bloodwork supported it being an infection (high platelets and inflammatory markers). So, they started the antibiotics at the hospital under the presumption that infection was most likely.
• But then, the pathologists from the first biopsy still couldn’t agree on ‘what is it? We have cells that are definitely abnormal, not like any of the stuff we see often, so what is it?’ In other words, they just weren’t convinced they knew enough to say “definitely an infection”— because they DID see some weird cells and some weird bone growth activity happening, just couldn’t tell what it was.
• so they brought it to a committee of further pathologist people and extra specialized experts, who said basically, ‘yeah I don’t know either… but I sure wouldn’t let it go. Something weird is definitely happening in there, and if it were me I don’t think there’s clear enough evidence here to rule out malignancy altogether— and even if it’s a benign tumor, you’ll need to know what kind in order to know how to treat it.’ Obviously I am quoting perfectly with all this high-powered medical language haha!
• So, an open biopsy was done by Edward Fox. Samples went back out to all the same experts and also have been having another more complex and fancy process called flow cytometry. I had to Google it.
• The bacterial cultures of those samples are all done. Cultures have grown zero bacteria or viruses or anything (that can happen and still be an infection though)
• But, if an infection, then theoretically he’d have had a fracture before by which blood with bacteria in it got in there, and then it grew in the bone marrow. Still possible, but not simple since there wasn’t any obvious trauma.
• Killing the infection is probably happening now (if it’s in there), BUT then they would look to underlying disease or something to get to why an unbroken bone was somehow compromised such as to let bacteria in there? Bones aren’t supposed to be that permeable. Hence the genetics and other stuff would come in. We have a geneticist appointment in January (it’s necessary that the more emergent situation be treated first, though they are looped in on the results as we go).
• So, maybe a tumor is more likely than infection, or preceded an infection…. But a tumor of an unfamiliar type. That’s what the pathologists are still working on now. They’re looking at it and running time consuming labs on it, and maybe meeting and talking to each other to try to see what they see, and most likely, if they don’t know for sure, then calling other super top people around the country and saying “hey, we’ve got this kid…” and getting consultation.
• The appointment with Dr. Fox, bone disease hero, on Sept 1 is partly just looking at how his biopsy wound is healing up. They’ll X-ray and stuff.
• But also he’ll share any findings, or if it’s still not clear, refer to further tests or experts.
• So, on September 1, we may or may not find out that he may or may not have cancer or another kind of tumor or an infection.

We wait in uncertainty and try to care for our family emotionally and materially for now. When we know we know.

In W’s own words: “there was something weird on my leg bone, an infection or tumor or something, and they had to cut out a chunk of it to figure out what it is.” And we’re all practicing just doing our best to stick with what’s true now rather than polluting the water with “what ifs.”