Where we are: Kolbjorn (along with Kirk, Kristen, Annika, and Birgitte) is in Oklahoma City Thursday night, scheduled for a PET scan Friday morning, and then going through intake and hopefully receiving his first treatment of an alternative DMSO-based therapy in Tulsa later that afternoon. He should be receiving daily treatments for nearly three weeks. Julianna and Mari are still currently in Outlook, but will likely be joining the rest of the family in Oklahoma shortly. Kolbjorn is still in a lot of pain and discomfort, but it is being fairly well managed through regular doses of morphine, as well as anti-inflammatory and anti-nausea drugs.
How we got here: In the literal sense, via a 28-hour marathon drive (with only two drivers powered by desperation and caffeinated drinks) from Outlook to Oklahoma City (over 2300km) in a borrowed van (ours wasn't reliable enough). All things considered, the trip actually wasn't nearly as bad as it could have been (we had an absolutely wonderful short stop in Regina for Kol to see some of his cousins, and to get ride in a police cruiser with his uncle - hopefully the only time he ever rides in a police car while wearing pajamas and under the influence of morphine), and we have learned to love GPS navigation (except when the voice guidance starts to get bossy when you leave the plotted course to fill up with gas, have bathroom breaks, etc.). Despite complications, including finding the right schedule for Kol's morphine doses, dealing with physical and emotional exhaustion for the drivers, and a troublesome cell phone (currently unable to send or receive phone calls or texts, or to check voice mail - it's about as useful as a small brick), we arrived at the hotel late Thursday evening, got Kol settled in bed, and finally got a useful Internet connection (the WiFi at RUH was very unreliable for most of the time we were there - one of the reasons why we haven't updated the blog until now).
In the less literal "how did we end up in this situation" sense, it's been building a very long time. Almost from the minute of Kolbjorn's original diagnosis back in June 2010, Kristen has been researching alternative treatments, building up a list of potential "plan B" options in case conventional treatment proved not to be enough. When we received the results of Kol's MRI in December, she began searching out doctors and clinics that would be able to provide these treatments. The search was hampered by holiday office closures, doctors on vacation, and our own busy Christmas season, but eventually we found a clinic in Tulsa that offered a comprehensive treatment program that included almost all of our top choices for alternative treatments, that wouldn't have the toxic side-effects of conventional radiation and chemotherapy, and we began making plans to take Kol down to Tulsa.
This past Saturday morning, just hours before the blood vessel burst in Kol's tumour, we had gotten confirmation from the clinic that they had received most of the necessary medical records and information, and that they would begin the process of scheduling a pre-treatment PET scan, which would be followed shortly by treatments. Kirk was going to take a few weeks off of work and fly down to Oklahoma with Kol, and other family members might join them at various times during the treatments.
All those plans burst when the blood vessel did. Suddenly Kol was unable to fly (the changes in air pressure would amplify the pain and discomfort caused by the swelling in his brain), suddenly the time we thought we had to get things ready (for example, renewing Kol's passport) vanished, replaced with a sense of overwhelming urgency and near panic. As Obert (Kol's grandpa) commented at one point, doors seemed to be opening and closing incredibly fast - it would seem like one option would work, then almost seconds later it would be ruled out, followed swiftly by another promising option. The final decision for Kristen and Kirk to go together with Kol (and to bring the other siblings either immediately or else soon afterwards) wasn't made until just a few hours before we left for Oklahoma.
Where do we go now: The plans for Mari and Julianna joining the rest of the family are still being worked on. We don't even have our hotel in Tulsa booked yet. We're just concentrating on getting Kol to Tulsa as quickly as possible after the PET scan, and working out the details there. We have no guarantees that this treatment will be effective, and we know it may be controversial - but we have to try, and the conventional options are just as unproven in terms of their effectiveness, and their side-effects are much, much worse. We're flying a lot by the seat of our pants, but we have faith that somehow, in the grand scheme of creation, it will all work out... eventually.
I'm sure I (Kirk) am missing some details here that Kristen will add in later, but we wanted to get something up to let everyone know what is going on. Thank you all so much for the encouragement (hugs, phone calls, cards, emails, comments, etc.) and for the prayers. We are overwhelmed at how much support we have received from our family, our friends, our community, and even complete strangers who happen to find out about our situation. May God continue to be with us, to watch over us, to guide us in decisions yet to be made, and to fill our hearts with His love, His strength, His joy, and His comfort.