We met with Dr. Packer today. Without going into too many of the grueling details, let’s just say our appointment was riddled with hard evidence for Murphy’s Law. It started with us needing gas and finding the closest gas station completely shut down, and it only got worse from there.
After stumbling through the obstacles and afflictions, we finally got to see Dr. Murphy, I mean Dr. Packer (I actually typed “Dr. Murphy” the first time, almost deleted it, then decided to keep it that way). He was a really nice guy, and Sophie liked him a lot. At first he examined her. He said she looks great. Then he pulled up her recent brain scans and showed them to us. He also relayed the official radiologist’s reading of those scans – all clear.
In looking to get more information about PMA, the type of tumor that we were told was removed from Sophie’s head, I asked a few questions. His response to my questions was simple and it was unexpected.
Sophie didn’t have a pilomyxoid astrocytoma removed. We had been misinformed. Dr. Packer pulled up a document that resembled a long email exchange. It was the pathology on Sophie’s tumor. In it were notes, comments and explanations bouncing back and forth between the Children’s Hospital biopsy lab and Dr. Burger (the man who, with his team, named PMA as a new type of tumor over a decade ago). Last we were told in January, Dr. Burger believed Sophie’s tumor was a pilomyxoid astrocytoma. Dr. Packer told us that Dr. Burger had not been happy with the result, and had gone back to have another look at her slides.
It turns out Dr. Burger couldn’t place Sophie’s tumor squarely into any category. He ended up making something up.
Now, before you cry foul, remember that pathology is more of an art than a science. To categorize a tumor cell, you have to look at it under a microscope and decide how mutated it is compared to the healthy cells it originated from, then rate the level of mutation on a scale of one to four. This is a highly subjective and imprecise process – an art form. If anyone is going to make up a category to put a tumor in for my daughter, I think Dr. Burger is a good candidate. I’m not one to say who the best is in his field, but Dr. Burger has literally written the book on the subject, and I’m feeling rather inclined to believe him in these matters (Dr. Packer appeared to have the same level of confidence in the new pathology from Dr. Burger).
Essentially, Dr. Burger is now saying that Sophie’s tumor (if I recall his words correctly) was a grade two pilocytic astrocytoma (PA). The explanation was that the tumor appears to be a typical PA (the low grade form of which is the most common pediatric brain tumor and is generally harmless once removed) with slightly more aggressive mutations, which is why he is calling it a grade two PA. This is also why we will still be getting MRIs every three months this year rather than every six months (as would be the case in a normal PA patient).
Of course, I may not have understood exactly, but that is what I took away from the meeting.
As time goes on and each time we meet with the doctors, we will continue to learn more. For now, I’m relieved that her tumor was (probably) not PMA. PMA sounds a little frightening as there is evidence it may have a higher mortality rate than other astrocytomas.
I should also note that the Children’s Hospital biopsy lab was thinking her tumor may have been some kind of glioma (I think, but I can’t remember), but they were so uncertain that they deferred to Dr. Burger – the expert.
On a personal note, judging from his photo, I think I would like to meet Dr. Burger. He seems like a very interesting man.
Finally, I asked about the research opportunities that were taking place where Sophie’s tumor cells may be of use. Dr. Packer told us that, just recently, an agreement was made between several large hospitals regarding pediatric brain tumor studies. In the agreement, the Children’s Hospital became a major supplier of samples, and another hospital (I can’t remember which one for sure, may have been Johns Hopkins) will be conducting in-depth genetic and other analysis of the cells. In fact, if Sophie has a recurrence, they will immediately perform a detailed genetic analysis of her tumor cells and, in Dr. Packer’s words, “they will find [Sophie’s] cute gene in there somewhere.” For now, we were assured that her samples are already part of the studies.
Sophie liked Dr. Packer so much that by the time we made it to the car to leave, she was chanting, “Doctor … PACKER!” Eventually she said it so smoothly, it sounded the same as if you or I said, “Dr. Packer.” It’s really cute to hear her say it. If you ever call, be sure to get her on the phone to say, “Dr. Packer” for you.
As always, watch this space for updates when they come.