Kirk and I were just re-reading some of the recent posts on the blog, and we realized that we haven't written about the results of the the MRI that Kol had on September 23rd.
According to the oncologist, there is still a mass, 1 cm in diameter, remaining in the fluid space in Kol's left ventricle. There is no way of telling if that is just what was left behind, or if it is growing, or if it is shrinking - at least according to the Dr. we talked to. We'll find out more after his next MRI at the end of November, or beginning December.
The neurosurgeon said that he removed about 90 - 95% of the tumour in the fluid space, and he also said that the tumour was originally about 4 cm in diameter. Kirk did the math, and what is left would be about 1 - 2% of the original tumour size - assuming that the tumours were perfect spheres, and that they were exactly 4 cm and 1 cm. This is encouraging to me, at least. I choose to believe at this point that it means that the tumour has not grown.
Kol had a few headaches again during the last 2 weeks before his second cycle of chemo started. They are most likely either caused by changes in the tumour size, causing his brain to adapt to the new pressure inside the brain or by gluten withdrawl (there'll be more about this in another post). These headaches are different than the ones he had before his surgery. These come on suddenly, are quite uncomfortable, but usually go away relatively quickly, too. Kol hasn't had to take any medication for these headaches yet, but he also has a very high tolerance for pain.
We were in Saskatoon for the day on October 20th, and Kol fell asleep on the way in to the city. When he woke up, he was sick. He was sick again later in the day - again after having napped in the car. Thankfully he has been well since, however, every recurrence of the tumour symptoms brings new questions and worries. Every new complaint causes concern about chemo side effects, a new growth, or some secondary infection. I wish others could understand. I hope none of you will.
I miss the days when a headache was just a headache, and vomiting was just caused by the latest 24 hour stomach bug that was going around town. I thought the worry would lessen over time, but in lots of ways, it has just intensified. We have Kol back - he survived long enough to have surgery, and recovered from that and the radiation. He is handling chemo well. For that, I am extremely thankful. In spite of all of this, or maybe because of it, I am really starting to realize that as long as Kolbjorn is alive, the worry will always be there. We need to learn to live with that constant worry, because it's much better than the alternative. I want to see Kol get married, be a father, live a productive life. As the song says, "heaven is a wonderful place" but I'm selfish enough to want Kol to experience what he can here on earth first. He has so much to learn - and so much to teach me.