Improvement, sharks and a report

Today was a quiet day again. The kids and grandpa watched T.V. and played on computers while Kirk and I went out shopping together. It was the first time we've been alone - just the two of us - since the day before we took Kol to the E.R. on January 7. It was nice to relax and reconnect, even if it was just a trip to Walmart. We're still feeling pretty tired - I think I've managed to get 2 nights of uninterrupted sleep in the last two and a half weeks.

Kol is still constantly improving. He is getting stronger and more capable every day. Exactly two weeks ago, we were driving through Regina with a police escort and Kolbjorn was riding in the squad car with his uncle. He was tired and groggy, almost unresponsive and was in a lot of pain. He was getting morphine almost every hour, and he had been sick twice on the drive from Outlook to Regina. We were uncertain whether we should be travelling so far with such a sick kid, and yet I felt peace for the first time in days. The first few days we were here, Kol mostly slept, could barely walk, and was still getting morphine regularly. Tonight, he is sitting at the table in our hotel room, playing on Poptropica. Earlier today he went for a walk with Grandpa to check out some of the stores that are in the little strip mall beside our hotel. It has been 3½ days since he has had any morphine, and he's only had 1 Tylenol tablet since. It's hard to believe we've been through so much in such a short time.

Yesterday we decided Kol was strong enough to go to the Oklahoma Aquarium for the afternoon. We took the wheelchair with us and Kol rode in it most of the time; we did more walking than he felt he was ready to do. It turned out that Kol was pretty grumpy while we were there, so he didn't enjoy it as much as the rest of us did, at least not at first. There was an amazing shark tank with two tunnels under the tank, and a huge dome in the middle. We could see sharks all around us. It almost felt like we were swimming with the sharks. When Kol got there, he finally started to enjoy himself. He really liked the sharks. We also got to see beavers and river otters up close, at feeding time. It was pretty cool.

I suspect the grumpiness was a result of one of the medications he's still on. Dexamethazone is a steroid used to help reduce inflammation and the side effects include irritability and mood changes. I would love it if we could take him off of this medication, but we can't until after Kol's next PET scan. We need to see if the tumour is responding to the DMSO first.

Yesterday we also got the written report from the PET scan Kol had in Oklahoma City on January 13. Among other things, it said that the tumour was 3.2 cm in diameter. That's smaller than what it was 20 months ago, before the surgery, but it's bigger than it has been. Kol will be having another PET scan on our way home to see if there has been any change in the size of the tumour. DMSO interferes with the scan, so we need to wait until it is completely out of Kol's system before he can have the scan. It is completely out of the body in 48 hours, which means that the scan will probably be on the afternoon of Friday, February 3rd. His last treatment in Tulsa will be on the Wednesday, February 1st.

The girls are here!

Our family is together again, and we are so happy! Kol was asleep when we got the girls (and Dad) to the hotel, so he wasn't posing for a picture, but the little girls were sure glad to see them.

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.

Another quiet day

Today was a relatively quiet day. Treatment doesn't start until noon on weekends, so we got to sleep in a bit longer than usual. Aside from a bit of a nap during treatment, Kol was awake and alert pretty much all day long, and had no painkillers since waking up in the morning. Some more LEGO was built, some TV was watched, and a nice day at the hotel was had. I (Kirk), on the other hand, had a nasty headache when we returned from the clinic, and ended up taking a major dose of Advil and sleeping for a few hours - feels like Kol and I switched roles for a bit today.

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.

The girls are coming!

In less than 48 hours, Julianna and Mari will be here with us! They're flying down Sunday with my dad, and we're so excited to have our family all together again.

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.

Slow and steady

It seems that every day, Kol is slightly more active and more alert. Today after we got back from Kol's treatment, he and Kirk built a Star Wars Lego ship. He was sitting at the table for quite a long time before he got tired. After a nap (I even napped, too) he woke up and asked Kirk if just the 2 of them could go somewhere. Kirk took Kol to Barnes and Noble (where else) and got a few books. By the time they got home, Kol was tired, his head was hurting again and he was grumpy with Annika for being too loud - but he was still in a good mood. He read his new Star Wars cookbook until he fell asleep. It was the best day yet. He did need pain medicine this evening, though, so I hope he didn't overdo it. He's moaning in his sleep now, in spite of just having had a dose of morphine.

We're glad we moved out of Hospitality House. It was nice there and we were well taken care of, but it was cramped and the walls were thin, so we were constantly trying to keep the kids quiet. I didn't realize how tense I was until we got to the hotel and felt myself start to relax and breathe again. Hospitality House was also close to a hospital so there were lots of sirens, and air. I haven't had an uninterrupted night's sleep since before we took Kol to the E.R. in Saskatoon, but there were fewer interruptions last night and I did get a nap today, so I'm finally not so exhausted.

Today has been good.

Movin' on up

It may not quite be a deluxe apartment in the sky, but it is on the east side (or to the east of Tulsa). Today we moved out of Hospitality House (which was a lovely place, and would have been perfect if we'd had one or two less kids with us) over to TownePlace Suites in Broken Arrow. Right now we're in a double suite (two queen beds plus a full kitchen - fridge, stove, oven, microwave), and by Sunday we will be in an even bigger suite (two separate bedrooms with a queen bed each, plus a double sofabed in the living room), which means that the big girls will be joining us very soon! We are so excited to see them!

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.

The kindness of strangers

Today was a good day, relatively speaking. We saw more of Kol today - more of his personality breaking through the fog of pain and morphine. And that has done our hearts good.

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.

The Effectiveness of Prayer

I wish you all could feel what it's like being on the receiving end of so much prayer. It was - is - amazing, and incredibly comforting to see and feel the changes, both in Kol's behavior and in my attitude. Kirk's attitude has improved, too. Last time I posted, we were feeling lost, worried, alone. We were tired. We were wanting the comfort of home, and our own beds, and family. We still long for our own beds, and can't wait to get home, but we are feeling better than we did 2 days ago. Thank-you for all of the comments on the blog, for the e-mail messages and for praying. I could definitely feel the prayers, and see evidence of improvement. On Sunday, as they day went on, and as more people heard about Kol, read the blog, and began to pray, I actually started to feel lighter. I actually feel like I'm being carried. It probably doesn't make sense - but it's cool.

On Sunday we took Kol for his treatment, and then were lazy for the rest of the day. It was just what we needed. We saw more evidence of improvement in Kol's health; more subtle signs that he is doing better. He hasn't needed as much morphine in the last 2 days. He finally had a bowel movement - the first in a week (I know - he'll probably be mortified that I'm talking about this) which was a big relief. In more ways than one. :-) He had 2 more today. Morphine causes constipation, which can in turn greatly increase pain levels, and increase the need for morphine. Morphine also makes people groggy, and reduces interest in eating. We don't want Kol to need more morphine.

I was also concerned that Kol wasn't eating much. He just had no appetite, and seemed weak. Morphine works better (is absorbed better, and it's effects last longer) on a full stomach, so we were giving him green smoothies every time he got morphine, but it wasn't enough to sustain him. For Christmas we bought ourselves a new juicer that will juice spinach, kale, and wheatgrass in addition to apples, carrots, etc. It was finally delivered the day we left, so we brought it with us. Saturday evening I found an organic grocery store and was able to get veggies and wheatgrass, so I've been giving Kol a few ounces of green juice every couple of hours all day yesterday and today. He doesn't like the juice, and is getting more vocal about not liking it every time I give it to him (which I think is a good thing) but I know that he's at least getting concentrated, good quality nutrients into his body. The nutrients from green juice are very bio-availabe, and easily absorbed by the body, so he doesn't need to use his limited energy to digest his food. It also works as a natural, gentle laxative. In a day, Kol had the juice from an entire bag of spinach, 5 or 6 carrots, a whole head of broccoli, a big bunch of kale, a bit of wheatgrass, 1/2 of a beet, some Brussels sprouts and 1/2 of a cucumber. I also added some ground up seeds to his juice once today. I'm still not sure he's getting enough calories yet, but I do think that'll come.

Today Kol got another PICC line inserted. We went to a local children's hospital to have that done by an expert. I was really impressed with the staff there - I expected some hassle, or lecture about using alternative, unproven treatments, but they were actually very supportive. I think some off that might also be from the way the system is set up - as long as you're willing to pay, they'll do whatever you want. The person who put the line in really knew her stuff, although it still took her 4 tries. Kol's veins are just so small and fragile that it's tough to get a line in. He's really starting to look a bit bruised. It took 5 tries to get an IV in him in Saskatoon last week, 2 more tries here on Friday to get an IV, and now 4 pokes to get the PICC in. This should be the end of it, though. Before the PICC insertion, Kol sat up, watching TV, with his eyes open for close to an hour, in bright lights. When we got his IV at the same place on Friday, he sat very still the entire time with his hand shielding his closed eyes. By the end of the PICC line insertion, though, he was in a lot of pain and needed a morphine boost. He was not happy at all with the procedure. I can't blame him.

The improvement we're seeing could just be because the blood from the broken vessel is finally being cleared away, and re-absorbed, or it could be more. One thing DMSO is known for is it's anti-inflammatory properties. It can be sprayed on a swollen ankle, and you could literally watch the swelling go down within minutes. Administered internally, it reduces any inflammation in the body. If it does nothing else, it is at least helping to reduce the pain Kol has been having.

Thank-you again - from the bottom of our hearts - for all of your support, positive comments, e-mails, phone calls, and most of all for your prayers. God is doing great things and I'm really excited to see what comes out of all of this. Our attitudes are improving, and we're not quite as tired as we were but we're still feeling the distance. We'll be here at least 19 or 20 more days, and I'm sure we'll have more good days, and more bad days. I'm more confident that we'll make it through now.

Feeling lost, lonely, and exhausted.

I'm sorry we haven't been updating the blog much in the last few days, It seems that we have always had too much going on - things to get done, and not much down time to just sit down and write. Also, we have had pretty flaky internet connections most places, which just makes it frustrating.

Yesterday, Kol got a PET scan first thing in the morning. It went well, Kol managed to charm the staff there, in spite of being in quite a lot of pain. We had to withhold some of his medication, since certain medications may give false readings on the scan. Directly after the scan, we drove 2 more hours to Tulsa to arrive at the treatment center. Since we had copies of recent bloodwork done at the hospital in Saskatoon, Kol didn't have to have blood drawn, and could begin treatment right away. The bad part was that the nurse didn't feel confident in placing an IV (which was not really a surprise - it had taken 5 tries to place one last week in Saskatoon.), so we were sent down the street to the children's hospital to get an IV placed. Once back at the clinic, Kol got his first treatment. It went smoothly, although by the end of the day Kol was so very tired and just wanted to stop hurting. After the treatment, we went to the hotel, had supper, and fell asleep almost immediately.

Yesterday the staff at the clinic helped us arrange a room here at Hospitality House, and we were able to move in today. It's somewhat similar to Ronald McDonald House, I guess, except that it's not just for families of sick kids, and it's run by a local church. It seems to be a nice place. We have a small, one bedroom apartment, with a bit of a kitchen, but it's on the second floor, and we have nieghbors who are also tired from dealing with sick family members, so we're trying to keep the kids quiet. Annika is not co-operating well. We are on the second floor and it's tough for Kol to walk up the stairs, so we need to carry him up. As nice as it is here, (cheap, too) we probably won't be staying long. There isn't room for the big girls, either.

Today has been quieter. For the last week, we've been constantly on the go, operating on adrenalin. There was always something to get done, to take care of. Today, the only things we had to do were check into our new residence and take Kol to meet with his Doctor. We made a grocery run, and Kirk picked up a card for his new cell.

Today has been a tough day emotionally for both Kirk and me. Maybe it's because we're so physically and emotionally exhausted, maybe it's because we're so far from home and from our support network, or maybe we've just come face to face with reality. It's so hard to see Kolbjorn in pain. He doesn't have much appetite, nor does he want to drink much. He has had 2 DMSO treatments now, and there are moments when we see improvements, or at least think we see improvements. There are little, subtle things, like the tone of his voice, the way he moves, how wide open his eyes are, that are encouraging. At the same time, it's easy to put these down to wishful thinking. We know that if this works, healing won't happen overnight, but we're really tired of seeing Kol hurting and being unable to help. I felt this same way last Tuesday - just hours before we made the decision to come to Tulsa.

We need your prayers now more than ever. Within the next week, Kolbjorn will probably be receiving some additional treatments.

As down and as worn out as I am, I still feel that coming here was the right thing to do. It was the best option we had at the time. It was amazing how everything came together for us to go, and how well the trip went. It just felt right. I felt at peace with our decision to do such a risky thing. I don't think I'm second guessing my decision, but I think the reality of it is sinking in. My strength is faltering.

Please pray.

The present, the past, the future

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.