Monday, January 30, 2012
2:I HAVE 2 TREATMENT DAYS LEFT! (after today)
3:I got a few new books (WHICH ARE AWESOME!).
Like my mom had said, it is going to be hard to say goodbye, like to the radiation nurses and doctors.
Grandpa left today. *sniff*.
AND that ends my VERY FIRST and VERY SHORT blog post!!!!!!!!!!! WHOOOOHOOOOO!!!!!!!!
Sunday, January 29, 2012
Saturday morning, shortly after we had finished breakfast in the hotel’s breakfast nook by the lobby, our family was ambushed by Imperial troops:
Fortunately, these servants of the Emperor were on a mercy mission – they were members of the Star Garrison of the 501st Legion, a group of Star Wars costume enthusiasts, and they had come to visit Kol.
The troops brought gifts for all the kids, including a very nice red lightsaber for Kol (who declared himself a Sith Lord, which went over very well with the Imperials), trading cards for members of the 501st, and certificates declaring all the kids “Honorary Imperial Cadets”. Everything went really well… right up to the point that Obert mentioned that he was nicknamed “Obi-Wan”:
Thanks so much to Maureen W for getting in touch with the 501st and getting the ball rolling, to Star Garrison CO TK 1672 for helping organize the visit, and to Star Garrison members TB 4610, TK 8127, and TR 8285 for putting on a great show for us (and for the random bystanders in the hotel lobby).
In less than a week, we should be on our way home to Saskatchewan!
Thursday, January 26, 2012
Monday, January 23, 2012
Another good day for Kol. It's been over 36 hours since he's needed morphine, and he's only had a single dose of Tylenol in that time, so that feels like progress. Whether it's just the bleed healing, or actual tumor shrinkage, it's impossible to say, but it feels good nonetheless.
Today was day 10 of Kol's treatment, which means we're halfway through. Hard to believe we'll be on our way home in less than two weeks. Thank you all for your prayers and support so far.
Sunday, January 22, 2012
One thing has re-entered our life in the past few days that we hadn't noticed was missing - music. A couple days ago, while waiting in the van for something (I believe Kristen was picking up a prescription at Walgreen), I suddenly realized that we hadn't had any music playing since we left Outlook, so I plugged my iPod into the van's stereo system and got some tunes going. We didn't realize how much we missed it until we had it again. The alarm clock in our hotel suite also has an iPod connector, so tonight we had some soft music going while the kids were going to sleep. It's been a good addition to our life here - now if there was some way to get a piano here, things would be just about perfect. Probably can't fit a baby grand into the hotel elevator though, at least not without drawing some attention.
In less than 24 hours, Julianna and Mari will be here, along with Dad. When I was talking with them on the phone tonight, I started to (jokingly) say something to the effect of "when I see you guys at the airport, don't you dare start crying" but almost started crying in the middle of saying it - I'm even getting a little weepy typing this right now. It's another one of those things that I probably won't completely realize how much I missed until it's back. There will be tears, hugs, laughs, and it will be good. I can't wait.
Saturday, January 21, 2012
Kol had a pretty good day today - he's needing less and less pain medication, he's been more alert and smiling, he's walking easier (although he still prefers to ride in his wheelchair).
Today's unexpected visit came from an old family friend - Vaughn Roste (I don't think I've seen him since 1994 or so) is living in Oklahoma, and stopped by for a visit. It was good catching up with him, and it also gave us a chance to play host and have him stay for supper - nothing fancy, just some basic spaghetti and a simple salad, but it felt good to be the host for a change.
Kol just rolled over in his bed and said (in an annoyed tone) "Don't you guys ever turn that OFF?!?", so I guess it's time to turn off the TV and shut down the laptop for the night.
Thursday, January 19, 2012
Wednesday, January 18, 2012
Even without the excitement of our cross-town move and the anticipation of the girls joining us, today was a pretty good day. Again, we got to see more of the Kol we know (even if it was grumpy, tired Kol), and again he hasn't been in as much pain as before. He's gotten a little more accepting of the juice (or at least more resigned to his fate!), and there have been some wonderful moments where I catch him watching me, and he catches me catching him, and a slightly shy but comfortable smile crosses his face. It almost brings tears to my eyes, it feels so good to see him smile.
Tuesday, January 17, 2012
Today we were also graced with an unexpected gift of hospitality and friendship. We'd never met Kevin Wagner before, and he'd never met us, but today he called us up after having been contacted by our pastor (who he had worked with in Birch Hills) and one of my cousins (who went to LCBI with him). He's an evangelist, with his headquarters in Tulsa, and he came to visit us at our suite in Hospitality House after Kol's treatment today. After visiting and praying with him for a while, he invited us to come to his home for the afternoon. We had a wonderful time there, meeting his wife Nicole and his two younger sons (as well as his in-laws, who had just arrived that afternoon), but probably the biggest highlight of the visit was when his youngest son (14 years old) brought out some of his LEGO collection, including some Star Wars sets that Kol hasn't seen before. Kol's eyes completely lit up, and he got right down on the floor and started playing and comparing notes with the Wagner boy - and I have to admit, I was right down on the floor with them, checking out the new sets and geeking out about various Star Wars, LEGO, and other related topics. It was so good to see Kol getting excited, even if it did tire him out (he ended up crashing on the couch a little bit later). We're definitely looking forward to spending time with the Wagners again during our stay here in Tulsa.
Because of the connections we have (LCBI, cousins, etc.) it's hard to call the Wagners "strangers", but we have been blessed by strangers in the past couple weeks. For example - just before we left for Oklahoma, I went to the passport office to submit Kol's renewal, and while in line I ended up chatting with another person. It didn't take long before I was explaining to him why I was renewing Kol's passport and planning for our Oklahoma trip. As I left the office, he unexpectedly stopped me and handed me some cash - "to help with our expenses" - and got the address for this blog (if you're reading, thanks again Curt!) so that he could keep up-to-date. For another example, today one of the nurses at the clinic where Kol is being treated gave us a big bag of hand-me-down clothes that were Birgitte's size - again, totally unexpected, and very welcome (Birgitte had a lot of fun trying them all on tonight). All these kindnesses from people we barely know is humbling, and we are grateful and amazed at it.
And of course, the support we have from those who are not strangers to us - our families, our friends, our community, our church, and beyond - has been overwhelming and wonderful as well. Thank you all for that.
We're still trying to figure out accommodations and when the big girls will join us here in Tulsa, but I think we're close to a decision.
Please continue to pray for Kol's healing, that the treatments will be effective at reducing or eliminating the tumour, that his body will continue to recover from all it's been through in the past 18 months, that we will be able to find a way to get him the nutrition he needs without him hating us for it, that we will all get enough sleep, and that we will be able to maintain family harmony despite these many days in close quarters (in other words, that we will survive "cabin fever"). Thank you.
Monday, January 16, 2012
Saturday, January 14, 2012
Friday, January 13, 2012
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.
Sunday, January 8, 2012
banana earlier. Kristen isn't impressed with most of the hospital food (no surprises there), and will be getting our blender here ASAP to start making some smoothies for him.
Thank you for all the prayers and messages of encouragement, and sorry we can't necessarily reply to each one, but please know that they have brought us comfort.