What the heck happened?

Or, I guess the beginning of all this...

Back in May, 2006 someone in the classroom noticed a "bulge" on the left side of the back of Tim's neck. Seemed kind of odd. It was the middle of the spring soccer season so perhaps this was a muscle bruise of some sort. But he could not remember getting injured. Nothing else seemed out of place, no stiffness in the area, it wasn't hot, just a bulge.

A trip to the family medicine doc was in order but he was clueless. He prescribed a round of antibiotics on the premise that this could be a deep infection. After two weeks there was really no change. Next we were off to an ENT specialist in the group who wanted to get a CT scan of the neck done to see what we were dealing with. Results clearly showed a mass that looked like it was cystic in nature. That is, likely fluid filled. It was in-between the muscle layers of the neck and quite deep up against the skull. As part of the CT scan, a syrinx was discovered (the subject of another blog entry) in the spinal cord. That got a pediatric neurosurgeon in the mix who then got a different ENT surgeon involved.

After more scans (MRI scans since neurosurgeons like those rather than CT scans) the syrinx was clearly there and we proceeded down a path to understand the cause of that. The tissue growth which was now being called a tumor was referred to the second ENT to deal with. The next step was to do a needle biopsy and see what we were dealing with. Unfortunately since the thought was that the tumor was quite vascular the aspirate didn't really end up getting cells of the tumor. Rather it was just blood and some skin tissue. Anyway, that showed no malignancy.

Even so, the tumor had to come out. We couldn't really tell if it had been growing recently or had been there for a long time. Surgery was scheduled for a Monday morning and would involve both the ENT surgeon and neurosugeon since the tumor was quite close to the skull and spinal column.

The tumor was resected, photographed, made into slides but no quick diagnosis could be made by the pathologist. The slide set had to go to some experts and it took about two weeks for the data to come back as embryonal rhabdomyosarcoma. In the meantime, the ENT surgeon had contacted the pediatric oncologist at the MSTI in Boise and when the diagnosis of cancer came back it was one day later that we were in the oncologist's office and talking about chemotherapy and radiation treatment.

Oncologists are a funny lot. They are blunt and they have to be. Cancer is really no joke and to get the point across it was clearly stated that you will die from this if no treatment is done. However, the treatment prognosis is good and a lot depends on how the tumor is staged. A treatment plan was set up to begin the following week and that week would include more tests and the insertion of a under the skin access port for all the meds.

--bob