The last few days have been emotional ones for us. We've been remembering the events of last spring - a year ago. Today was especially significant.
One year ago this morning, we got pathology results from Kol's tumour. We learned that the tumour was not a low grade tumour as we had thought, but rather a rare, fast-growing, aggressive tumour. That was more of a shock than learning that Kol had a brain tumour and that he needed immediate surgery. I can't even describe how I felt. I keep coming up with cliches, like "the rug was pulled out from beneath me", "the bottom fell out", "turned my life upside down", "the day everything changed", "like I was punched in the gut", "gut-wrenching", "sucker-punched", or "topsy-turvy." It was the most traumatic day of my life thus far. I have to admit that I didn't really think that the tumour might be malignant. The odds were certainly on our side, and since Kol had been doing so well up to that point, I just assumed the rest would be easy, too.
Maybe it was such a shock because, when we first learned about the tumour, we were just so relieved that we finally knew why Kol was sick and that something could be done about it. Maybe it was because we knew that Kol absolutely needed the surgery to save his life. Maybe, I took it so hard because we had just gotten Kol back - he had survived the surgery, and would recover - and then it felt like he was taken from us. The surgeon had said that the majority of supratentorial tumours (the part of the brain where Kolbjorn's tumour was) were low grade - meaning that they would be considered benign if found elsewhere in the body. Low grade tumours wouldn't require further treatment. Now we had no idea what we would be facing, what Kol's future would be, what our family's future would be. I had thought that the tumour would just be a little "blip" in our lives; Kol had had most of the tumour removed, he would recover enough to be able to go home again in a few more days. There didn't appear to be much brain damage at that point - Kol was finally able to speak again, and although he was weak, was regaining his motor control. We had our son back, he was healthy, he had a cool story to tell and a neat scar to show off. And then we got the pathology report. We were no longer at the end of the journey, but just barely starting.
We have come a long way since then. We've learned so much, grown so much. It's been good, terrifying, difficult. Kol has defied the odds and we are thankful. We have Kol back and he is healthier than ever. We thank God for this blessing.
Cancer is a terrible disease, and we know it could come back quickly, with little warning. There is a little girl, just a bit younger than Kol, who was diagnosed with an sPNET tumour about a year before Kol. In November, when we first heard about this child, she was doing well - her hair was back, her scans were promising, and she was able to attend school. Then, this spring, several months after she had finished her treatments, an MRI found two new tumours in her brain. There are no guarantees in this world.