Ped Onc

Ever since Ruby's surgery, she has been going in for follow-up visits with both her surgeon as well as a pediatric oncologist at UCSF. As much as we would have liked to not ever think about it again once her incision healed, the pathology report on the teratoma that was resected indicated that there was a "micro-focus" of immature cells. Basically a teratoma is a type of tumor that contains cells, tissues, or sometimes organs that are normally developed but are often quite different from the surrounding tissue. For example, Ruby's teratoma was located on the base of her tailbone, but it contained cells normally found in the brain such as neurons and glial cells. If all of the cells within the teratoma are mature, or normally differentiated, then the teratoma is classified as benign, and no follow-up is needed. In Ruby's case, a small cluster of cells on one of the tissue sections appeared immature. Although Ruby's surgeon was confident that the entire tumor was resected, and the region of immature cells was extremely small, the recommendation was that we receive follow-up care to ensure there was no regrowth.

As part of her follow-up care, Ruby paid monthly visits to a pediatric oncologist at UCSF. The main purpose of these visits was to run labs checking for alpha-fetoprotein (AFP) levels in her blood. AFP levels are highest in fetuses, and they should decrease over time after birth. Elevated AFP levels after birth could be indicative of tumor growth, so the tests were meant to ensure that Ruby's AFP levels were on a downward trend after the surgery.

The results of the first blood test following surgery showed a dramatic reduction in AFP, from ~800 ng/mL to ~200 ng/mL. However, the following month, the numbers went up slightly to ~280. Ruby's doctor assured us that this could be caused by stochastic fluctuations in protein production, and as long as we once again saw a decrease the following month, there was nothing to worry about. At the time of her third blood test, Ruby was about 5 months old. A couple days after the test, I received a call from her doctor while I was at work. I was well aware at that point that any special attention from attending doctors was bad news. He told me that Ruby's AFP levels had increased again, this time to ~390, and that he recommended that she undergo another MRI.

At the time of Ruby's first MRI, I had assured myself that we would not have to go through the experience again. Since the procedure is done under general anesthesia, we couldn't give her any milk for at least 8 hours before the procedure. This was not a problem when she was 2 weeks old as she was still so sleepy that she never woke up on her own anyways, but I could not imagine denying a 5 month old food for 8 hours. Another thought that I had denied the possibility of was that she might actually need another surgery. I could also not imagine going through another recovery period, especially with her being much more alert and aware as a 5 month old than as a 1 month old.

After taking a moment to fight off the initial wave of nausea, I asked the doctor if it would be possible to first do an ultrasound and another blood test, as these were far less invasive, before going ahead with the MRI. He agreed, but said that if her AFP levels did not decrease on the next blood test, that they would definitely need to perform the MRI.

I think I stumbled through the following week in a daze, not really hearing what people were saying to me and not being able to hold any other thoughts in my head. In an unhappy coincidence, this also happened to be the same period of time that I was under a huge deadline at lab for my paper resubmission. (I ended up giving up on resubmitting by the deadline. Fortunately, the science gods took pity on me, and the paper was accepted anyways.)

The ultrasound was performed to look for signs of tumor regrowth and also to check for abnormalities of the liver (another possible cause of increased AFP). We waited at the doctor's office for over two hours for the results. After harrassing multiple nurses and receptionists, we were told that the ultrasound was negative.

As this was during the week of Thanksgiving, the results from the blood test would not be available until the following Monday. Even though we were on vacation in Hawaii by then, I compulsively checked my cell phone that entire day. This time nobody called when they said they would. It turns out neglect from medical professionals is always good sign, and when we finally tracked down the Pediatric Oncology nurse, she told us that Ruby's AFP had gone down.

Since that time, our follow-up visits at Ped. Onc. have been spaced out a bit more. Each time, Ruby's AFP levels continued to fall. At this most recent visit just last week, her AFP was down to 20 ng/mL.

This time last year, the last place I thought that I would be spending my time is in the waiting room of the Pediatric Oncology clinic. I used to think of the families with children in these clinics as Those Families, as if there was some intangible divide that separated Them from those of Us who have healthy children. Sitting in the Ped. Onc. waiting room, I realized that there is no divide. We are all the same, all hoping for the best and trying to protect our kids from the worst. That one child receives a more favorable test result than another does not make one family less fortunate than the other. Our good fortune is that we get to know and be parents to our kids in the first place.