Monday, February 13, 2012


It's been wonderful being home and trying to get back into our normal routine. The kids went to almost all of their band, piano and voice lessons last week, we are starting to dig ourselves out from under all of the mess we left behind (although I must admit that the christmas tree is still up - the decorations are put away, though!) and we are all getting to relax. I feel like I can finally breathe again, and the muscles in my neck that were spasming while we were in Oklahoma have relaxed.

Kol still gets tired easily, and occasionally has naps during the day. He's always ready to sleep by about 9:00 - and even asks to go to bed. He still has a constant low-grade headache, but he usually doesn't want to take anything for it. He is also still on the steroid prescribed by his oncologist here.

We decided to do another round of the DMSO treatments at home, so Kol still has the PICC line, and is still being hooked up to an IV every day. We got training at the clinic before we left on how to set up the IV, what to watch for, and how to give an IV using gravity feed as opposed to the pumps that are usually used for IVs. It usually takes about an hour to an hour and a half for Kol to get the full treatment. Today is day 9 already, and he is hooked up to the IV right now, playing on the laptop. Because he is still getting the DMSO, he still smells like sulfur - or like garlic, or slightly spoiled milk, or spoiling cabbage or broccoli. I can't quite decide what the smell actually is most like. It varies from day to day, I think. It's not really that bad, and we have gotten used to it - mostly. If you want to read more about DMSO, this is a decent place to start. The chemical name is (CH3)SO.

We got the results from the second PET scan last week. Kirk's comment regarding the results is that "we are learning patience". A wise lady told him that it's not patience, it's endurance. We are in it for the long haul. The results of the PET scan were inconclusive. Or rather, the scan really told us nothing. There were changes in Kol's brain, but it's impossible to tell, at this point, what the changes are from. That's the short answer. In detail, there was more swelling around the tumour site. Increased swelling is often a sign of tumour growth. However, the tumour itself was not visible at all on the scan. That means that either the tumour is dying (and therefore wouldn't absorb contrast) and the swelling is due to the dead tissue, OR, that the increased swelling blocked the tumour from being able to absorb the contrast. If the tumour didn't absorb contrast, it wouldn't be seen on the scan.

On another note, this Thursday, February 16th, is the Heading for a Cure fundraiser for the Brain Tumour Foundation. To be honest, we kept forgetting about it while we were gone, or we would have given you more notice. It was a really fun evening last year, with some incredibly good music. This year, Kol (and maybe Kirk and I, too) will be giving a short presentation while the bands are shifting. We probably only have 5 to 10 minutes to speak, and I'm not sure what we'll be talking about yet. However, we'd love to see you there. There is a silent auction in addition to the music and presentations. Kirk says the music will be awesome again, too.

1 comment:

  1. glad to hear you guys are starting to settle in, prayers are still with you guys - I will be home in a couple of weeks, so maybe we can catch up for coffee!