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.

Sunday update

Kol is feeling more or less OK this morning, but he's still obviously dealing with some pain. The medication is helping, and there are times when he seems quite alert and cheerful, but he is sleeping often and seems a little groggy much of the time when he is awake. This is likely at least partly due to the morphine, I think. He hasn't eaten a lot yet, but he did eat a
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.

Kol admitted to RUH

After a CT scan, Kol has been admitted to Royal University Hospital. Apparently a blood vessel in the tumour burst, which caused increased pressure, which in turn caused the pain and nausea. Kol is being given dexamethazone to reduce the swelling in his brain, ondansetron to deal with the nausea, and Tylenol to help with the pain and mild fever. Hopefully he will only be here for a couple days. Kristen and I (and Annika) will be staying in the city with him.

Kol going to ER in Saskatoon

We're just about to leave for Saskatoon to take Kol to the ER. He had a severe headache come on very suddenly this afternoon (Saturday), and after talking to his oncologist we are going to take him to the RUH ER for testing (probably CT scan) and hopefully some pain relief. Please pray.

Prayers, thanks, and updates

On Tuesday December 27 at 7:00pm, there will be a service of prayers for healing for Kolbjorn at Bethlehem Lutheran church in Outlook, similar to what we did back in June 2010. Please consider this your invitation to join us.

We want to say "Thank you" to everyone who has called us, emailed us, stopped to talk with us at church or the post office or the grocery store, or simply kept us in your prayers. We really appreciate your support.

We've spent this past week recovering from the shock of the MRI results, researching different treatments, and of course simply being caught up in the business of the holiday season - the Sunday School Christmas program plus various other recitals and concerts has kept us on the go for the past few days.

It looks like we won't get any new treatment started until after Christmas, so we're looking forward to being able to simply enjoy spending time with together with our families and friends. Merry Christmas to you, and may 2012 be a year of healing and renewal for us all.

"There's been some growth."

This is not a sentence I ever wanted to hear from Kol's oncologist. However, it's exactly what we heard when he called Wednesday to ask us to come in to see him on Thursday. If it's good news, the oncologist will just tell us on the phone. When it's bad, we get asked to come in person.

"There's been some growth."

It's not at all what we expected to hear. Kolbjorn has gained some much needed weight, has grown taller (which was not a given, since a possible side effect on the radiation was pituitary damage and hormone regulation), his hair is back (darker, but just as curly as before), he has lots of energy, and we learned on Tuesday that he is not developing cataracts yet (which we were told is a given as a result of the radiation). So far, there are only subtle signs of cognitive issues. We are constantly watching Kol for signs of relapse, and we haven't noticed any signs or symptoms of tumour growth - no co-ordination problems, headaches, unusual vomiting (although Kol was sensitive to a new supplement he recently started getting) or slurred speech. Kol has come through all of the treatment with flying colours.

"There's been some growth."

We feel blind-sided. Our hearts are broken, tears are close to the surface. The original tumour has started growing again. It is noticeably larger on the MRI images we saw. The possible, "tiny spot" that the radiologist "might" have seen in September has also grown. We don't want to do this again. I feel weak, overwhelmed. Scared. Lost.

"There's been some growth."

There is no standard protocol at this point - the only "proven" treatment is the chemo that Kol has already been through, and the oncologist says that the tumour that is left is resistant to that treatment. There is no effective treatment that the Cancer Agency can offer Kolbjorn at all. Nothing proven, all experimental, nothing that has been proven to be even as effective as the treatment Kol has already had.

The oncologist did give us options for a different chemo treatment, either a cocktail of two chemo drugs, or being part of a study that would possibly add a third drug to the mix - in either case, 12 treatment cycles, each cycle lasting a month. One of the drugs is administered intravenously, and would require Kol to be admitted to hospital for a minimum of five days each cycle during treatment. There is no data as to how effective it would be for Kol's condition. In addition to the typical chemo side effects (weakness, low appetite, nausea, vomiting, low blood counts, hair loss) one of these drugs causes severe diarrhea, and another one would put Kol at risk for bleeding. If he were on that drug, he would not be eligible for surgery of any kind until a period of time after discontinuing it.

Surgery may be an option - the oncologist hasn't consulted Kol's neurosurgeon yet - however the tumour is apparently near a brain structure that contains a bundle of nerves that control movement, which could make it tricky. The doctor didn't really seem to be too hopeful about the possibility.

"There's been some growth."

This leaves us with few choices, and yet lots of choices. Because there is no proven effective cure, we can not be considered negligent for choosing alternative treatments, or even for choosing to do nothing at all. I've done tons of reading and research in the last 18 + months, and there are some encouraging alternative treatments that wouldn't impact Kol's quality of life so drastically.

We are taking some time to gather more information and to pray. We do know, however that we don't have too long to make our decision, as this tumour is growing quickly, and the more growth, the harder it will be to treat.

"There's been some growth."

Throughout the last 18 months, we as a family have grown in many ways. And, with this new tumour growth, I expect more growth. It's just so painful. I am so proud of our kids - of the way they pulled together to support each other when we told them about what the doctor said.

We know that God is the great healer. He has Kol in his hands, and I know that He is capable of healing our precious son. Please pray for direction for us; for guidance in making the decisions we have to make, and for peace for us - especially for Kolbjorn and the girls.

It's been a long time since I've thought about the old hymn - the one that kept popping into my head when Kol was first diagnosed, but I've been hearing it again throughout the last 24 hours.

To God be the glory, great things he hath done!
So loved he the world that he gave us his Son,
who yielded his life an atonement for sin,
and opened the lifegate that all may go in.

Praise the Lord, praise the Lord, let the earth hear his voice!
Praise the Lord, praise the Lord, let the people rejoice!
O come to the Father thru Jesus the Son,
and give him the glory, great things he hath done!

O perfect redemption, the purchase of blood,
to every believer the promise of God;
the vilest offender who truly believes,
that moment from Jesus a pardon receives.
(refrain)

Great things he hath taught us, great things he hath done,
and great our rejoicing thru Jesus the Son;
but purer, and higher, and greater will be
our wonder, our transport, when Jesus we see.
(refrain)

Above all, please also pray fervently for Kol's complete recovery. The God of the Bible, God of Abraham and Isaac, who created the world, who has conquered evil and who sent Jesus to be our saviour, is infinitely capable of healing a little boy. We give God the glory for Kol's health and survival to this point. We give Him the glory for healing our son, and for the work He continues to do in our lives. Pray that God uses our pain and struggle to reach others. It's painful for us, but I think it would be even more painful if I knew that all of our pain had no purpose - that nothing good would come from our hurt. I want to believe - maybe even need to believe - that our pain now is small in comparison to an eternity without God.

MRI results coming

We have an appointment with Kol's oncologist tomorrow morning (Thursday) to discuss the results of his recent MRI scan. Please pray.