Sunday, December 2, 2012

Candle lighting December 9th

Shortly after Kol's death, Kristen and I attended a support group in Saskatoon for bereaved parents called The Compassionate Friends, and have continued going regularly since. It's been good to be able to talk with other parents who have lost children, to hear their stories of how they're coping, and what they are doing to honor and remember their children.

This coming Sunday (December 9th), the Compassionate Friends have their annual Worldwide Candle Lighting event. At 7PM in each time zone around the world, candles are lit in memory of children who have died, and kept lit for an hour until the next time zone lights their candles. It's a "wave of light" that goes around the world for 24 hours. While we won't be joining in the Saskatoon group's get-together this year, we will be observing this at home, and we'd like to invite you to observe it in your home as well if you're able. At 7PM in your local time zone, simply light a candle and keep it lit for an hour.

We will light our candle in memory of our dear son Kolbjorn. We will light our candle in memory of my brother Eric and our nephew Dag. We will light our candle in memory of all the kids we've met or become aware of through various cancer and brain tumour support groups who have lost their battles. We will light our candle in memory of all the children who have left their earthly home far, far too soon.

Wednesday, November 21, 2012


It's six months today since Kol died.  It seems like yesterday.  It seems like a lifetime.

It's been a long time since we've written anything on the blog.  I know there are still some who check here daily for updates, and I'm sorry it's been so long.  It's been hard to know what to write.  It's hard to know how open to be.  I don't want to risk being judged.  I want to be honest.  I don't want to be negative.  I can't be honest without being negative.  While there are so many things that I feel I need to share, I haven't even really felt capable of writing lately.  The thought of writing made me feel tired, overwhelmed, and confused.

At Bible Study this week, we talked about Peter walking on the water.  When he was focusing on Christ, outside of himself, he was able to do something amazing - he walked on the water.  As soon as he looked away and saw the wind and the choppy water around him, he started to fall.  Fear took over.  His trust disappeared, and he started sinking.  He couldn't get back to the surface, and didn't know what to do to get back up.

During most of the last 6 months, I've felt like I imagine Peter did when he was sinking.  I think our whole family has been feeling like that.  We've been lost, sinking under the grief from Kol's death.  I don't mean that we've lost faith, although Kol's death has certainly inspired us to re-examine what we believe, and why.  I do mean that we've been surrounded by the reminders that what we believed to be a safe, secure existence has no guarantees; that the future we expect to have can be taken in an instant, and we can fall from that safe place, to chaos without notice.  We don't know how to get back up to that safe place without calling to God for help, and yet we also know that He never promised us a pain-free life.  We feel Kolbjorn's absence so strongly.  It doesn't seem fair.  We miss him.  He should still be here, telling me all about the book he's reading, or explaining the purpose of all the little parts on the latest Lego creation he was building.  He should be here.

I wonder how Kol would have changed in the last 6 months.  Would he still do the blender dance, or would he have a new dance? What new songs would he have made up on his iPod?  What games would he like to play now?  What books would he be interested in now?  What new ways would he have devised to get out of distasteful things?  What else would he be interested in? Would he have grown taller? What kind of medical or neurological problems would we be facing?  There are no answers to these questions, and that fact leaves me with a longing for the empty, Kolbjorn sized hole in my heart to be filled.  The knowledge that it can never be filled again causes my heart to break just a little bit more.

The emotions come in waves - some days are easier than others.  Even on the good days, though, I often just want to hide.  There are days when I'm just angry, days when I'm numb, and days when it seems I can't stop crying.  I do believe that someday, the ache will just be a part of me - that I'll be able to look at that hole, and accept that it's part of who I am.  I can't do that yet.

Thank-you for continuing to check on the blog, for continuing to pray, for continuing to stand by us.   Thank-you for the unexpected flowers.  It's good to know we're not alone.

Thursday, September 13, 2012

Remembering (through stories, pictures, and parties)

This is our 200th published post on Kolbjorn's Journey,  so we thought it'd be the perfect time to remember the past 28 months.  I occasionally go back through the blog and and re-read the posts.  I'm drawn to certain ones more than others - the fun ones, the big announcements, the ones that I had no choice about writing, the ones that have lots of comments.  It's surprising how much we forget.  It's surprising what we remember.  It's good to remember.  It's hard to remember.  

Kol liked to remember.  I'd often have Kol read through our posts on the blog before they were published, just to make sure that I hadn't said anything he didn't want shared, or if he had anything to add.  After reading the preview, he'd start going back through the archived posts and re-read them, too.  He liked remembering what he'd been through, and I know he was interested in seeing his life through our perspective.  His favourite posts were the ones that had pictures, star wars references, or video, although he did read the hard ones, too.

Annika's newest word is 'remember'- except she says 'member.   A couple of days ago, she  said "Kol.  Hands cold. 'Member?"  She had insisted on holding Kol's hand after he had died, and when she did, she told me that his hand was cold.  She remembered that.  I've often wondered if she will have her own memories of him, or if she'll just remember him through the stories we tell about him.  None of us have talked about Kol's cold hands, though.  She does have her own memories.

One day at supper we'd been talking about Kol and Annika saw tears in Kirk's eyes.
     "Daddy sad?" she asked.  Kirk said yes.        
     "Kol died."
     "Yes, Kol died." answered Kirk
     "Kol love."  This is Annika speak for "You love Kol." Kirk said yes.
     "Miss Kol?"  Kirk nodded.  Then Annika left the kitchen, and came back a few seconds later with the picture of Kol that is beside the couch, which she gave to Kirk.

We've been asked a few times if we talk about Kol, or if it's too hard to talk about him.   I could talk about Kol for hours.  I'd cry, but it'd be good tears.  Immediately after Kol died, I felt I needed to do as much as possible to preserve the memories I had of him.  I worried my memories of Kol would be reduced to a short movie in my head of just a few events. I still worry about that sometimes.  I wanted to remember his voice, his laugh, his smell, the feel of his hand in mine, the softness of his hair, his bald head, his breath on my cheek when he fell asleep in my arms, his hugs, his goofy blender dance, his machine-gun laugh.  I wanted to remember the way he told me about what was happening in the books he was reading, assuming that I knew exactly what he was talking about.  I wanted to be able to hear him explain how he beat the tough level on the Wii game he was playing.  I wanted to remember what he sounded like when he was crying, when he was angry, frustrated.  I want to remember how he looked in his suit, in the goofy hats he insisted on wearing.   

Everything I've read about grieving says that it's a long process, and that it's important to give ourselves permission to grieve however we need to.  I'm finding it's a crazy, topsy-turvy journey, and nothing is predictable.  While I love remembering Kol, there are also some days now when I don't want to think about Kol.  I don't want to think too much about the pain he was in, or about how horrible he must have felt some days.  I don't want to remember even the good things, because even the good memories bring back the hard memories.  I don't want to cry again, and any memory - even a good one - is a reminder that Kol was no longer here.   Kirk and the girls all swing between needing to remember and needing to forget, too. 

I've been going to a mom's bible study since the fall of 1999.  I've made some good friends through the group.  This summer, the other families in the group got together and ordered portraits for us from Carla Chabot, and had them framed.  They even came and hung them on our walls for us! It was an amazing and wonderful surprise, and we can't thank them enough!  The photos are from the family sitting we had in 2011.  We now have two photo walls, one in our living room, and one in the almost completed homeschool area.  I sometimes sit down opposite the walls, staring at the photos, remembering.  We also have a slide show of pictures of Kol as a screen saver.  Some days, I've watched those pictures for hours.  Other days, I can't watch them at all.   


Kolbjorn's birthday is coming soon, and we will be having a "Remembering Kolbjorn" party to mark the occasion.  We're hoping it will be a healing time, a chance to strengthen relationships, and an opportunity to remember Kol.  Kolbjorn would be turning 10 on September 27th.

Saturday, September 22, 2012
2:00pm - 4:00pm
Bethlehem Lutheran Church, Outlook

We'll have cake! And fun.

If you have photos, or memories of Kol, we'd love to hear and see them.  You can leave a comment, or if you'd rather, our contact info is here.

Tuesday, August 21, 2012

Three Months

Kolbjorn died three months ago.  It feels like a lifetime.  It feels like just a moment.  Sometimes, it feels like the last 3 months have all been a dream.  Sometimes it feels like it was Kol's whole life that was the dream.

It hurts just as much today as it did three months ago.  We miss him so much.  Julianna and Mari spent a week at camp this month and Birgitte spent the mornings that week at VBS.  While it was good to have time to just focus on Annika and Birgitte, it was really good to have everyone back together after camp.  Except that everyone wasn't there.  Kol has left such a big hole - I don't know how to fill it.  I don't want to fill it.  Our family dynamic has changed - it's still changing.  I want what we had back.

Some days are better than others.  On the bad days, I just want to hide, stay away from people.  I don't want to deal with the awkward smiles from people who don't know what to say to us anymore.  On the bad days, I don't want to smile, or pretend that I'm doing fine. On the bad days, I know that I'll burst into tears if someone says something nice to me. Today was a hard day.  Earlier today, two sisters - friends of Julianna and Mari's - stopped by with flowers and a card, and said that their family was still thinking of us.  I don't know if it was a random thing, or if they remembered that today is the anniversary of Kol's death.  Either way, it meant a lot.  I could barely stop crying enough to say thank-you.

On the good days, I say that I'm doing OK when they ask how we're doing - because, at the moment, I am feeling OK.  Then I wonder - are these people going to think that we're doing fine overall?  Are they going to think that we're getting over the grief?  It may seem petty, but I'm scared that people think that we don't need them any more.  We've said it many times before, but we are incredibly thankful for all of the people praying for us, thinking about us, showing us love and support.  We still need you.  And there are probably lots of other people in our "circles" - in your circles - that are probably hurting more than we realize, and who need love and support, too.  We all need people.  We need relationships.  That is probably the most important lesson that I've learned through Kolbjorn's illness and death.  We all need other people in our lives.  Things are nice, but it's the relationships that are most important.

The recording of the tribute that Kirk and I gave at Kol's funeral is now on YouTube.  I have to admit that I haven't seen it yet - I'm not sure that I can yet.  However, we'd like to share it with you.  The text of the tribute is below, if you'd rather read it, or read along.  I did add and change a few things while I was speaking though, so the text isn't exactly the same.  [Kirk adds: I have no idea how we managed to hold it together through that speech.  Maybe we were still in shock?]


(Kristen) Not all parents have an opportunity to do what we get to do today - to be able to stand up here and brag about our child to an audience who truly wants to hear what we have to say.  Today, we will say good bye to our only son, but before we do that, we want to tell you more about him - about his passions, his likes and dislikes, and his heart.

(Kirk) When I think of Kol, I remember him stumbling out of his bedroom in the morning, hair sticking out every which way, rubbing sleep from his eyes, and with a hopeful smile on his face asking whether he can go play on the computer, never remembering that the answer is always "get dressed, have breakfast, and then we'll see". I think of him sitting at the kitchen table with a snack of sliced apples and almond butter, curled up on the living room couch with a stack of books and comics beside him, or up on his top bunk, surrounded by LEGO. I think of him down in the family room, perhaps watching cartoons on Netflix, or playing games on the Wii, or out in the backyard, chasing (and being chased by) his sisters. I see him laughing, with a twinkle in his eye, a smile on his face, enthusiastically talking to anyone who would listen about whatever topic currently had his interest - LEGO, Star Wars, a Wii game he was in the middle of playing, a book he was in the middle of reading, a movie he had just watched, what happens in our mitochondria or even the intricacies and mysteries of Kinder Eggs.

(Kristen) Kol was a happy baby - as long as he got to eat when he wanted to.  Even as a newborn, he loved snuggling.  He'd put his head on my shoulder, and snuggle right in, and go to sleep. He loved being sung to - but regular lullabies, or children's songs didn't calm him.  Old hymns did.  When I sang Amazing Grace, or Peace Like a River, Kol would almost instantly relax.  When he got a bit older, Kol would play with my hair - twisting it around his finger as he drifted off to sleep.  Just last week, I noticed him twisting his own hair around his finger as he tried to sleep in spite of his headache.

(Kirk) Kol was a late talker. He barely spoke a word until he was well past three years old - but then he started talking in complete sentences, and had so many stories to tell. Even then, though, he often preferred non-verbal communication. He made up his own sign language, which he seemed to enjoy expressing himself with - however, it often seemed that he made us guess what he was trying to tell us, only explaining himself verbally after we became frustrated. Two years ago, while recovering from surgery, it took him a while before he started speaking again. The signing, however, came back quickly - although the only one I could recognize was the universal "cuckoo" sign. That particular sign was a favorite of his to describe me. The day he died, in one of his last lucid periods, I made a bad pun to try to get him to laugh - but all I got was the "cuckoo" sign. It made us laugh instead.  And then he smirked.

(Kristen) When Kol was a preschooler, he discovered "screen time".  He learned how to operate the mouse on the computer, and how to run the VCR.  Kol loved watching movies.  He'd have one favourite movie at a time, which he'd watch over and over again, as many times as he could get away with.  By about the 4th or 5th time through the movie, he'd have most of the dialogue memorized - right down to the inflections in the actors' voices.  Kol loved playing on the computer, too.  He'd play phonics games at, and go shopping for toys online.  We once discovered that he had a Veggietales shopping cart with over 5 thousand dollars worth of toys and videos in it.  It's good he didn't find our credit card, too.  Right around the time Kol turned 4, I decided that Kol was watching way too much T.V., so I started reading to him every time he wanted to watch a movie, or play on the computer.  He had learned the letter names when he was little, but when he was almost 4.5, he refused to answer me when I asked him to tell me what they were.  I thought he had forgotten them, so we started reading alphabet books again.  A week later, I was driving through Saskatoon, and Kol told me - word for word, what was on a billboard we had just seen.  Later that day, while driving past the town hall, Kol said "T-o-o-wn office - Mom!  That says Town Office."  He hadn't forgotten the letter names after all.  After that day, Kol began reading better and better.  Within 2 months, he was reading simple chapter books (like Magic Treehouse) independently.
(Kristen) Kol has always loved books.  When he was a toddler, he would choose 2 books, which had to go with him everywhere he went.   The titles changed every week or two, but he'd always be carrying 2 books with him, under his arm.  That love of books lasted.  When he learned that he would be eligible to receive a wish from the Children's Wish Foundation, Kol chose books, but he needed some place to store all of those books - so he decided on a "clubhouse library."  The library was delivered to our backyard last October.  Kol spent many hours sitting out in the clubhouse over the last 7 months reading.

(Kirk) Kol had little fear of addressing large crowds. The earliest example I can think of was at our congregation's annual meeting 4 or 5 years ago, in our old church building - some of you here may remember this incident. Right in the middle of the meeting, Kol burst out of the room where the kids were playing, raced right across the meeting hall, and as he was running he loudly announced "Don't worry, I'm just going to the bathroom!" This fearlessness served him well later. His voice rang out loud and clear whenever the Sunday School sang, nearly drowning out all others at times. He had a  significant speaking and singing role as Sgt. Tibbs in our local community theatre production of "101 Dalmations," which he handled like a pro. And over the past year, Kol became an in-demand public speaker, giving addresses at fundraising events for organizations like Camp Circle O' Friends, the Brain Tumour Foundation, and the local Relay for Life. Kol enjoyed being in the spotlight, but somehow he didn't let it go to his head - when he was done a speech or a performance, he was back to being a kid, running around and playing.

(Kirk) Kol was both a loner, and a very gracious host.  He loved it when people came to visit.  He tried to give every visitor a tour of the house - even the neighbour kids who spent hours everyday playing there.  One day, some friends stopped in for a brief visit just before meeting someone else for lunch. Shortly after they arrived, Kol came to the living room with a plate full of soda crackers (the only thing he could reach in the pantry) and insisted that everyone took one. As much as he liked visiting, he would often get tired of it quickly.   Then he'd grab a book or magazine, find a comfy spot, and start reading.  Even then, though, he loved sharing what he was reading, and would try to explain an interesting, or funny part in the story.   Usually we had no clue what he was talking about, not having read the story ourselves, but it was fun hearing his excitement.

(Kristen) Kol loved intensely.  Our girls' middle names are Hope, Faith, Joy and Grace. Although Kol was named after his grandfathers, we've often thought/joked that Kol's middle name should be "love".  Kol was passionate.  He didn't just like something, he loved it - he was completely absorbed by it.  He loved reading.  He loved LEGO, Star Wars, and Super Mario.  He loved his family - especially his sisters.  He loved his friends of all ages, and he inspired others to love him back. When he was little, we called him "the charmer."  He seemed to instinctively know what to say or do to win people over.   I don't know why, or how, but he was drawn to certain people.   And they were drawn to him. Through his honest smile, quiet strength, and complete enjoyment of the simple things in life, he has shown us how to love too - to reach out and latch on to those things that are important to us.

(Kristen) We will miss Kol.  (Kirk) We'll miss his smile, his dry sense of humour, his stories about his latest video game conquest.  (Kristen) We'll miss his snuggles, and hugs.  (Kirk) We'll miss his machine gun laugh, and his sensitive heart.  (Kristen) We'll miss his eyebrow wiggle, and his crazy hair.  (Kirk) We'll miss his quiet presence on the couch, curled up reading a book.  (Kristen) We'll be forever grateful for the 9 1/2 years that we got to spend with Kolbjorn, and for the lessons that he has taught us. (Kirk) We thank God for the past two years, because they made us realize how truly precious the time together was.  (Kristen) We thank God for the promise of eternal life, for the hope that this is only a temporary separation, and for the hope that we will one day be reunited with our dear boy.

To God be the glory. Amen.
We said in previous posts that we want to continue blogging - and we do.  I do.  I still have lots of things that I want to share, and I hope that there are some people out there who would still like to read what I have to say.  I'm sorry that I've made you wait so long between posts.  I'd like to say that will change, but I know I can't make promises.  It takes a lot of emotional energy to write what I want to say, even if writing is cathartic.  It's just that, on many days, I cry enough without facing the tears that inevitably come when I'm writing.  I will continue writing.  I just don't know how often.

Sunday, July 15, 2012

Perfect Rain

For as long as I can remember, I have liked rain.

It started raining as we left the hospital with Kol on the night that he died, and gradually became more intense.  Shortly after Kol died, we drove through heavy rain.  Kirk told me that when he was little, he thought rain was God's tears.  Maybe God was crying with us when Kol died; it's kind of a comforting thought.  The rain had stopped by the time we got home, but the ground was wet, and the air smelled fresh, like it does after the rain.  It's strange what details we remember from pivotal times in our lives.  It rained parts of the next day, and Tuesday evening we had what I think was the first thunderstorm of the season, complete with lightning and loud thunderclaps.  It rained on Wednesday as well.  The weather was warm for a couple of days, including the day of Kol's funeral, and then we had rain again for two days.

While some people were probably upset with the rain, I was pleased.  I needed that rain.  Well, I guess I didn't need it, but I like to think it helped me heal, or at least cope better with what was happening.  It matched my mood.  Some say rain is dreary - depressing.  While I think it can be so, especially after a long period of cold weather with unrelenting rain and darkly overcast skies, I've usually felt that rain is calming, comforting, relaxing.  I used to love standing outside, getting soaked on those warm summer afternoons when the warm, gentle rain comes suddenly.

Maybe the reason I like rain is the mysteriousness of it.  It's full of contradictions.  Rain is subtle, changing; it can be soft and gentle, yet it can be immensely powerful, damaging and dangerous.  We don't understand it.  Water drops are small, harmless, yet the chinese water torture is considered one of the most cruel kinds of torture there is.  In literature, rain is sometimes used to accentuate feelings of sadness, grief, loss and pain, or to amplify the difficulty of a task.  Sometimes rain symbolizes cleansing, renewal, and new growth - the beginning of something new.  I love thunderstorms, too, both the devastating power and awe inspiring beauty.  Storms symbolize anger, intensity, even danger, and yet they too are cleansing, refreshing, renewing.  Lightning signifies wrath, anger.  If you've read any Greek mythology (or Percy Jackson), you'll remember Zeus' masterbolt.  However, lightning nourishes the soil, causing new growth.

Now, when I look back at some of the more pivotal days in my life, I remember there was rain.  I was thrilled that Kirk and I drove through a heavy downpour on our way to Saskatoon for pictures on our wedding day.  There was rain the evening after Kol and I left the hospital when he was born.  I remember driving through rain on our way to see my dad the night before he died - we had celebrated Kolbjorn's 3rd birthday that day in Saskatoon.

One night, when Kol was little, we got caught in a particularly fierce storm on our way to Christopher Lake.  While we were pulled over to wait until visibility improved, I worried that the noise and lightning would scare the kids, so I talked about why I like storms.  Julianna, in her simple, 5 year old way, said that lightning was a good thing - that God made lightning in order to help people find their way home in the dark - the lightning was guiding the lost travelers home.

Right now, we're experiencing a storm of emotions: guilt and relief, guilt because of the relief, faith and fear, uncertainty and hope, joy and mourning, sadness, grief, loss and appreciation for what we have.

Maybe the storm we're experiencing is causing new growth in us.  Actually, I have no doubt that it is.  I just hate the pain that we have to go through in the process.  I don't like seeing our children or Kirk in pain.  There are times when we can laugh at a memory of Kol - his blender dance, his head bob, or his giggle.  I hope these are glimpses, glimmers of a time ahead when thinking of Kolbjorn won't be so bittersweet, flashes of light leading us home.

Thursday, June 21, 2012


We've been home for a couple of weeks after spending a few days being completely lazy at Christopher Lake.  We had no agenda, no expectations to live up to.  We slept in late, played in the (cold) lake water on the warmer days, and watched mindless, silly television shows (like America's Funniest Videos, Wipeout, Just For Laughs Gags, and Corner Gas) on the cooler days.  We watched "Milo and Otis" and remembered how Kol had laughed at the animals when he saw the movie the first time.  It was wonderful to just "be" - to not have any agenda, or list of things we needed to do.   We even got to visit with some old friends on the last couple of days there. 
It's a month today since Kolbjorn died.  I don't know how to describe the adjustments we've been forced to make in that time, without Kol.  I'm shocked at the complete range of emotions we've experienced - pain and sadness, relief, guilt and surprisingly, moments of joy.  It's certainly not what I expected.  My dad is the only other person that I've been really close to and lost.  It's so much more painful losing Kol than it was losing dad.  I've cried more tears than I thought possible. 

While we were at the lake, it was easy  to accept that Kol wasn't with us, that he had died.  We had had 2 years to get used to the possibility that Kol might die, and although I never really believed he would, we still had been forced to face that as a possible eventuality.  Maybe it was easier to accept his absence because the lake was never really Kol's element.  Whenever we were at the lake, Kol would disappear into a book and watch as much T.V. as he could get away with.  He liked swimming and playing in the sand, but whereas the girls would spend all day at the beach, Kol got tired of it after about an hour.  Maybe it was easier to accept Kol's absence because it didn't seem real yet that he was dead. 

It was tough coming home again.  Grocery shopping was surprisingly tough - and it wasn't because of the 3 people who stopped to give us hugs and ask us how we were doing (in  the 15 minutes we were actually in the store.)  I cried when I walked past the mangoes.  Kol loved mango sauce.  Then I saw straws and even reached out to grab a bag - I remembered that Kol had used up the last of his favourite green straws when we were working so hard to keep him hydrated - and then I realized that we wouldn't really need bendy straws much any more - and we still have other colours.

One day, maybe about a week and a half ago, Annika was standing in the hallway outside of the bedrooms, and was really fussy.  Mari was with her and at first tried to guess what Annika wanted, and then tried to distract her.  Mari is really good at knowing what Annika wants, and at distracting her if necessary, but this time, nothing worked.   Finally Mari got exasperated and asked "What do you want, Annika?"  Annika leaned against the door frame to Kol's room, and said, "Kol".

We've been trying to keep busy and get on with our lives, and aside from the constant ache of missing Kol, we've been able to get decisions made and to start being productive.  I pretend to garden.  I've had a herb garden since a year or two after we moved to Outlook.  It did well for a couple of years, but it's been neglected recently.  I haven't had much interest in gardening or yard work during the last couple of years.  This year, I've had an incredibly strong desire to get outside and get not only the herb garden, but also the flower beds somewhat rejuvenated.  After I went and spent way too much money on herbs, I found an article about health benefits of gardening which talks a bit about how gardening works as a treatment for depression.  Maybe I instinctively knew what could help me heal.  Or, it could be just like other years, where I have a big burst of energy in the spring, only to lose interest in the summer.  I enjoy buying and planting and planning, but not so much the upkeep. The girls have been joining me outside this year, helping me weed the flower beds. 

Kirk walked in the Spring Sprint on June 9th.  He walked 5km in the pouring rain with his dad.  Birgitte, my sister and brother-in-law and I walked a little way, but Birgitte's feet got sore quickly in her (actually Kol's) Star Wars rubber boots.  We went back to the park, and stood in the pouring rain waiting for him.  ( To be honest - the rain really wasn't that bad, though - we did all have rain clothes on - and it wasn't cold at all, and although it rained constantly, it wasn't really "pouring".)  It was tougher that I expected, though, to see others there who are still fighting brain tumours. Not only was I concerned for them, but I have to admit that I was jealous that they were still alive to fight when Kol isn't.

The following weekend - last weekend - we took part in the Relay for Life here in Outlook.  It was hard being at the Relay this year.  We knew it would be tough, especially after the sprint, but I had no idea how hard it was going to be to be a part of the Relay.  Kirk, Julianna and Mari were on a team, but all of us sat with the team, cheered them on and walked.  Annika got lots of stroller rides.  It was especially tough hearing someone else give "Survivor speech" that Kol had given last year, and seeing all of the luminaries around the track "in memory" of Kol, rather than "in honour" of him.  Kol should have been there.  I know both Kirk and I felt Kol's absence so very intensely that night.

Then came Father's Day.  Our first holiday without Kol.  We made a big deal out of the day - got Kirk lots of cards  and surprised him with a trip to Saskatoon - for supper, and to replace the pair of jeans of his that I cut up while we were at the lake.  It was a good day - good that we kept busy and tried to fill it with fun.

Birgitte had her 7th birthday this week.  Again, we strongly felt Kol's absence.  Kol and Birgitte were such good friends, and Kol loved parties, and doing things for his sisters.  We still had fun - Birgitte's grandparents all came for lunch, and her aunt and uncle surprised her with a visit in the afternoon.  She also got a very special phone call from her godparents. Birgitte loved being the center of attention.

I guess life goes on - but the pain of losing Kol is becoming more intense.  It's getting harder to accept, rather than easier.  Our tears are much closer to the surface.  All of our emotions are, actually.  I'm sure this is a temporary part of the grieving process, but that doesn't make it any easier to accept.  We all have holes in our hearts - shaped like Kol.  It's starting to feel real that he's not here with us, and that he never will be. 

Thursday, June 7, 2012

Kol bears

We were shocked at how many people came to Kolbjorn's funeral or sent us cards and e-mail messages.  I guess it shouldn't surprise us any more, knowing how many lives he's touched, but it does.  Kol was an extra special kid (yes, I'm bragging) and we miss him so incredibly much.

At the funeral, we gave away Kol bears.  Kol bears are little black stuffed bears.  

The name Kolbjorn, (or Kolbjørn as it is written in Norwegian) means black or dark bear.  Kol is an Old Norse word for black, and bjørn is the Norwegian word for bear.

Kolbjorn loved hugs and cuddles.  He would often come sit beside his mom, dad or a sister and rest his head on our shoulders or hold our hands. We sometimes joked that he was our teddy bear. While we can no longer hug him, or feel his head on our shoulders, we have a Kol bear to help us remember him.
Brain Cancer Ribbon
Childhood cancer ribbon
Each Kol bear has 3 ribbons.  The grey ribbons on the Kol bears symbolize mourning, and are also the symbol for brain cancer.  Gold symbolizes joy, what is precious, and the presence of God.  Gold ribbons also symbolize childhood cancer.  White is a symbol of resurrection and everlasting life.  
I know that there were people who weren't at the funeral, or who were but didn't get a bear.  We would like for anyone who would like a bear to remember Kol by to have one.  PLEASE - if you would like a bear let me know!  Or, if you know of someone else who would appreciate having one, tell me their name.  You can  e-mail me, or contact us however you want to.   We also have extra bulletins from the funeral.  Let me know if you'd like me to mail one to you.

I shouldn't be surprised at what kids say any more - our kids have had some incredibly insightful comments - but I am.  I just heard of a little girl who told her mom that she thought Kol stands for "Keep on loving".   It was so sweet, and so appropriate.  It makes me teary.  What makes this even more special is that this girl wasn't at Kol's funeral, so she didn't hear what we said about Kol and "love" in the tribute.
Kol loved intensely.  Our girls' middle names are Hope, Faith, Joy and Grace. Although Kol was named after his grandfathers, we've often thought or joked that Kol's middle name should be "Love".  Kol was passionate about the things he cared about.  He didn't just like something, he LOVED it - he was completely absorbed by it.  He loved reading.  He loved LEGO, Star Wars, and Super Mario.  He loved his family - especially his sisters - and he wasn't afraid of showing it.  He loved his friends of all ages, and he inspired others to love him back. When he was little, we called him "the charmer."  He seemed to instinctively know what to say or do to win people over.   I don't know why, or how, but he was drawn to certain people.   And they were drawn to him. Through his honest smile, quiet strength, and complete enjoyment of the simple things in life, he has shown us how to love too - to reach out and latch on to those things that are important to us.
Keep on loving!

P.S. In case you missed Kirk's post from yesterday, he will be participating in the Saskatoon  Spring Sprint.  Check out yesterday's post for more information.  Also, I have another blog post almost finished, too, so that should be up in the next couple of days. 

Wednesday, June 6, 2012

Spring Sprint

I (Kirk) am going to be participating in the 2012 Sprint Sprint in Saskatoon in support of the Brain Tumour Foundation. The Brain Tumour Foundation has been a wonderful support to us these past two years - they have excellent handbooks for brain tumour patients and families, and the support group in Saskatoon is fantastic - so we'd like to be able to give back to them. This is the same event that Kol gave a speech at last year, and had so much fun running with some friends from the Foundation.

If you'd like to, you can donate online to pledge me - I plan to walk (definitely not run!) at least the 2.5km, and depending on how much it's raining, I may even do the full 5km. I know many have already donated to the Brain Tumour Foundation in Kol's memory, and this is very last minute, but thank you for any support you can give. If you're in Outlook or Saskatoon and would rather not use the online donation system, please give me a call and we'll see what we can work out.

P.S. - now that we're back from our family getaway at Christopher Lake, we've got some more blog posts coming over the next couple days. I guess we missed blogging!

Sunday, May 27, 2012

Thank you

For two years, and especially for the past week, you have supported us, given us encouragement and comfort, prayed for and with us, and shared your love with us. We've said it before, but it bears saying again - thank you all so incredibly much for everything you have done for Kolbjorn and for our family. Some people have told us how strong we have been, but all I can say is that it's easy to look strong when we have so very many people holding us up. The local newspaper ran a tribute to Kol, calling him "the boy who lifted a town", but at the same time, the town and our community of friends and family across the country and around the world lifted us.

Kol's funeral was yesterday. As hard as it was to say goodbye to Kol, we rejoice that he is no longer in pain, and it was so absolutely uplifting to be able to connect with so many friends and family, to be able to share hugs, laughter, and tears with you. It was a big step in the healing process for us, an process that will be ongoing for some time.

Some have asked about the future of this blog, now that Kol is gone. We want to assure you that we intend to keep blogging - obviously the focus will change from Kolbjorn's journey to our family's journey, the updates will likely not be as urgent, but we have appreciated having this place to communicate with our friends and family. Over the next week or so, we'll be catching up on some much-needed downtime with our family, so we probably won't blog much for a while, but we will be back. Kristen, for one, has too many things to say (or at least that's what she tells me).

Again, thank you all so very much for all that you've done for Kol and for us, and please continue to keep us in your prayers. May God bless you and keep you, and we'll talk to you soon.

Kirk, Kristen, Julianna, Mari, Birgitte, and Annika Friggstad

Thursday, May 24, 2012

Obituary, viewing, and thanks

Just a few things we'd like to let you all know about:

  • Kol's obituary appeared in the Saskatoon Star Phoenix Thursday morning - I'm not sure if it will appear in the Friday edition as well, but it can be viewed online as well.
  • There will be a viewing and short prayer service on Saturday at 11:00am at the church, for family and for anyone who would like to attend. The casket will remain open until shortly before the funeral service begins at 2:00pm.
  • If you need a place to stay in Outlook, a number of people have offered their homes - please let us know and we'll help you find a bed.
  • If you don't know how to get to the church, please be aware that Google Maps shows it in the wrong spot - it should be at the corner of Ash Street and 4th Avenue, further north than where Google puts it.
Thank you all so much for your comments, emails, cards, letters, flowers, food, phone calls, hugs, and prayers. As sad as we are to be separated from Kol, we are so glad to be part of such a caring and loving community - not only our local community here in Outlook, but all our friends, family, and supporters throughout the province, across Canada and the USA, and around the world. We are blessed by you. Thank you again so very much.

Wednesday, May 23, 2012

Funeral details

Kol's funeral will be this Saturday, May 26, 2:00pm at Bethlehem Lutheran Church in Outlook. Please join us as we celebrate Kol's life, and take time to say good-bye to him. Children are more than welcome too.

Monday, May 21, 2012

Good-night, sweet prince.

Kol passed away quietly around 9:10pm tonight, in our van, on our way home to Outlook, surrounded by his loving family. We are now home in Outlook, with our families either already here or on their way. Thank you all so much for your continued prayers and support. We thank God that Kol is free from pain and suffering. And we thank God for his promises to comfort and sustain us through the trials of life. Amen.

Soon, and very soon

Kol is fading quickly. The doctors say it may be hours, it may be days, but it probably won't be weeks. After his seizure this morning, Kol had a brief time awake, but hasn't opened his eyes since. He is showing signs of neurological decline, and his breathing is becoming irregular and laboured. We are taking him home to Outlook tonight, with medicine and supplies to keep him comfortable. We ask for your prayers for Kol and for our family.


Kol had a rough night in the hospital. Despite getting IV meds for pain and nausea, he still threw up a few times, and still appears to be in pain - it's hard to say for sure, as he has been quite "non-verbal" most of the time.

Then this morning, Kol had what appeared to be a seizure - his body got very stiff and his eyes rolled up. His doctors say this is likely due to the tumour putting pressure on the brain, and are recommending adding anti-seizure medications to the painkiller and anti-nausea drugs that he's already getting. He has also been moved from his room on the ward to a room in observation, as some of the new meds need to be watched closely at first.

This also means that our "overnight" stay is being extended at least one more night. We're hoping and praying that it won't get any longer than that. Thank you all much for your prayers and support.

Sunday, May 20, 2012

Another hospital admission

The last few days have again been up and down.  Friday and Saturday were both very good days.  Today, however, Kol's vomiting got worse again, and he wasn't able to keep the anti-nausea medications in his system.  Without anti-nausea medications, the pain medication won't stay down, either.  We talked with Kol's doctors, and have decided to take Kol back to RUH so we can get him stabilized with iv meds.   This way, we can get Kol's pain under control faster, and he should be feeling better within a day. The doctor assures us that Kol will only be in hospital overnight. 

We are just packing up the van, and will be leaving shortly.  The girls are coming to Saskatoon with us, and will be hanging out at grandma and grandpa's house for a while. 

Tuesday, May 15, 2012

A Superhero Named Kol

Hey everyone reading this. This is Julianna and Mari, Kol's big sisters. Tonight Kol told mom he was feeling like a 'small, tiny, mite', and that he wanted to be a superhero. We're going to show him that he is a superhero! Contact us or Mom/Dad however you want, or leave a comment below, and let us know why you think he's a superhero. We'll put all your responses, and any bible verses you want us to, into a slide show and surprise him. You can choose whether you want your name in it, or if you want to be anonymous. This is a surprise for Kol, so we would appreciate it if no one told him anything about it!

Julianna and Mari

Saturday, May 12, 2012

Prayer for healing

I am constantly overwhelmed and surprised at the love and support that we have been given while on this journey through childhood brain cancer.  Both Kirk and I were surprised at how many people came out to Outlook - many of whom drove quite a long way, and many of whom we haven't seen in years - just to gather to pray.  We're honoured that so many people made the effort to come pray for healing.  It was so appreciated.  Thank-you from the bottom of our hearts.  Thank-you also to those who couldn't come, but took the time to pray for Kol wherever you were.  Thank-you also to everyone who fasted and spent time in personal prayer in the time leading up to the healing service.

It was also a privilege for us be able to share the time with others in need of prayer, and to be able to pray for their needs as well.  It's comforting knowing that we can cling to God's promises, and trust that He who created the world, the God of Jacob, our Heavenly Father, will answer. 
Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.  James 5:13 - 16
Above all, we thank God for hearing our prayers; for the healing He has done already in Kol's life; for bringing so many people, from all over the world and from diverse backgrounds together in a common purpose; for the lives that have been touched and changed through hearing Kol's story; for the plans He has for Kol's future.

Wednesday, May 9, 2012

Kol is in a lot of pain again.

It's been a couple of long days.  I'm tired.  I'm emotional. 

When I published the last blog post, on Sunday afternoon, Kol was doing really well.  A couple of hours later, he crashed.  His headache came back and he started vomiting again.  He slept well that night, however, and he spent most of Monday sitting on the couch.  On Tuesday, Kol didn't even get out of bed, except to use the bathroom. He was constantly vomiting - it was only in the late afternoon that the vomiting finally settled down.  His headache is constant, not really letting up at all.  Movement makes him sick, so he vomits every time he gets up to the bathroom.  We've been fighting to keep his medications in his system, let alone any food or liquid.  He's not hungry, either, so that makes it even harder.  I hooked him up to the IV on Tuesday,  but something in his PICC line got clogged, or the line moved somehow, which stopped the flow.  I'm trying to get an IV pump for at home, so we can give him more IV fluids, if necessary.

It seems like we've spent lots of time talking to doctors over the last few days.  I've sent and received e-mails from Dr. Khan in Toronto, Dr McKinney in Victoria, and we've spoken with at least 2 doctors from Saskatoon as well as a couple of nurses, and a pharmacist.  It's tiring trying to put all of the pieces together, and co-ordinate the recommendations.  I guess that's our fault for not just sticking with one doctor, and one set of providers.  On the other hand, we're getting lots of support and advice from all of the doctors, and especially from the doctors outside of the "conventional" system.   

Kol just started a new treatment last Tuesday, which might be contributing to the nausea.  It's tempting to stop the treatment, but in many ways, it feels like this is our last chance.  Some people respond really well to this treatment - and DCA has been known to shrink tumours quickly - so if Kol responds to it, it could be extremely effective. The doctors who are familiar with DCA and it's use are recommending that we stick with it. 

We know that the pain and vomiting Kol is experiencing is due to excess pressure in his brain.  What we don't know, is what is causing the increased pressure.  It could be several things.  It could be that the tumour is starting to respond to the DCA treatment, causing increased swelling around the tumour, or it could be that the tumour has just grown so big.  Either way, it's not easy to manage.

A couple of weeks ago, I talked about being angry - angrier than I ever remember being in my whole life.  On Monday, I was more scared than I ever remember being. I hate seeing Kol this sick, and in so much pain.  As you all know, I tend to do lots of research.  I need to know what my options are, and I can't relax until I feel I know what is going on.  I refuse to just follow blindly, taking someone else's opinions or advice at face value.  (Maybe Kirk's skepticism has rubbed off on me over the last 18 years?)   However, once I have as much information as I can get, or at least as much as I can handle, I tend to rely heavily on my "gut feelings" or intuition when it comes to making decisions.  I had a "gut feeling" that Kol had a brain tumour weeks before it was diagnosed.  At that time, I also had a "gut feeling" that Kol would be alright - that he would survive, and that everything would work out.   I felt at peace, and just knew that Kol would be alright, and that things would unfold as they should.  I've relied on that intuitive knowledge heavily for the last 2 years.  It's probably the reason I've been as strong as I have been.  On Monday, I was second guessing everything.  My faith, my confidence was failing.  One of my greatest fears has been the thought of having to watch, almost helplessly, while Kol was in pain.  Sometimes, that scares me more than the thought of Kol dying.  That has been our reality the last few days.

We are making progress, but it is slow going, and we still have options.  Almost all of the doctors seem to think, (or are at least giving me the impression that they think) this is a temporary, but we know that with a brain tumour, anything can happen - and it can happen quickly.  On Friday morning, Kol was running through the house, being goofy.  A bit more than an hour later, he vomited all over the floor at the Cancer center.  It hasn't gotten better since.

We thank God for each person who reads this blog, for all of the prayers that so many of you have raised, and continue to raise for Kol and for our family.  We know that we're all in God's hands and that He is powerful.  The God who created the universe and knows how many hairs Kol has on his head, is powerful.  He is mighty to save.  Someone told me to read this passage a few days ago.  I've been relying on it a lot since.

19 and how very great is his power at work in us who believe. This power working in us is the same as the mighty strength20 which he used when he raised Christ from death and seated him at his right side in the heavenly world.21 Christ rules there above all heavenly rulers, authorities, powers, and lords; he has a title superior to all titles of authority in this world and in the next. 

Sunday, May 6, 2012

Crisis over

Kol and I are back home again.  Kol was just in the hospital for observation overnight, receiving IV fluids.  We also increased his pain medication, so he's back to himself - mostly.  He is receiving morphine pretty regularly, which I'm not pleased about, but at least he's not in as much pain.  I'm hoping that the morphine is just a temporary thing, but it may not be.  He's apparently at a relatively low dose, so that's encouraging.  We were able to bring some IV supplies home with us, so that we can give Kol IV fluids ourselves in the future, if Kol gets dehydrated again.

I'm glad we got Kol the IV liquids.  Right after the IV was started, I came home and got Kol his blanket, some snacks, and his medications - which I absentmindedly left on the table on our way out the door.  When I got back to the hospital 30 minutes later, Kol was much more active,  was moving easier, and was much more communicative than he had been when I left.  It was great to see.  It was a long night, but it was a good one, too.  I stayed at the hospital, in a hide-a-bed, and Annika stayed with me.

I'm not sure what caused the dehydration/vomiting in the first place - and that worries me some.  It could be several things, or a combination - who knows.  1) He could have had a touch of the flu, but he didn't have a fever.  2) We just started him on some new medication which can cause nausea, but shouldn't cause vomiting.  In people who respond to the treatment, it can cause tumours to shrink rather quickly, which could cause vomiting (as the brain adjusts) but Kol's only been getting it since Tuesday, and it's not supposed to work that fast.  3) The tumour itself, if it starts to grow too big, can cause vomiting as the brain has to adjust to the cramped space. 4) We ran out of one of Kol's supplements - one that is used to reduce inflammation.  We had ordered more but it took longer than expected to arrive, so he missed several doses of it.

Probably our biggest concern, however, is more pronounced weakness on Kol's right side.  We've noticed that he he hasn't been using his right hand as much in the last few days, and when he smiles or talks, the right side of his mouth doesn't move the way it should.  He had very pronounced right side weakness after surgery.  It's not as pronounced now as it was then, but it is noticeable.  He can make the muscles move on his face if he concentrates, however, and his grip strength is equal in both hands, so that is encouraging.

Thank-you again for your prayers, and we hope to see you at the healing service this Friday night.

Saturday, May 5, 2012

Pain crisis

Kol is in rough shape right now - over the last 24 to 36 hours, he's been in more pain than usual, and for most of Friday had a constant headache.  He wasn't able to keep anything in his system - not even ondansetron (which is an anti-nausea medication).  

Kol had an appointment at the Cancer Centre yesterday morning, where he ended up vomiting all over the floor in front of the reception desk.  It didn't get much better after that.  Kol got some IV fluids, and some IV ondansetron, but it didn't help.  Kol had a rough night, and was in a lot of pain.  His headache was bad, and nothing would work.  It's been better today, but he's lost so much fluid, and he hasn't eaten, so he's getting dehydrated.

Kristen got a call from the pediatric palliative care specialist today (we were supposed to meet with her yesterday, but it didn't happen).  She does a lot of work with pain management, and said that she believes Kol is having a "pain crisis" so we discussed pain management strategies.  As a result, Kristen is getting ready to take Kol to the hospital in Outlook so he can get some IV fluids, and hopefully, we'll be able to get his pain under control a bit better.  We should only be at the hospital for a few hours.

Thank-you for praying for us.  If you can make it to the healing service on Friday night, we'd love to see you.

Friday, May 4, 2012

Come pray with us!

We will be having another prayer and healing service for Kolbjorn.  It will be on Friday, May 11, at 7:30, at Bethlehem Lutheran Church in Outlook.  We'll have praise time, and then we'll have a service of healing and prayer for Kolbjorn.  Following the prayers for Kol, there will be an opportunity for anyone else to receive prayer for healing as well - be it physical, emotional, mental, or spiritual.

We have been overwhelmed at the number of people who have come to pray for healing for Kolbjorn in the past; it's wonderful to have people gather just to pray.  This will be an opportunity for us to "pass it on" by taking the opportunity to pray for others in need as well.  Please feel free to come, to pray and to be prayed for, and pass this message on to anyone else who needs healing.  This night is not just for Kolbjorn - it's for everyone.

Wednesday, April 18, 2012

More headaches

It's been almost 3 weeks since we've updated the blog. I haven't really known what to say. This post is kind of rambling, it needs editing, but I'm too tired, and I just need to share what's been happening around here lately. These weeks have been tougher for us, and for Kol. We've been doing a lot of soul searching, praying, and crying. I've been anxious, jumpy, and on the verge of tears more than I have been for a long time. Kol's headaches still aren't really any better. He still has at least one headache a day, sometimes 2 or more. If Kol can have a nap when he gets a headache, he'll feel better when he wakes up, or else a regular strength Tylenol usually gets rid of the pain. He's not having as many "flash" headaches - the headaches don't usually go away until he sleeps, or gets Tylenol. Last week, Kol had 2 days where he vomited. That was disconcerting to us. The only symptoms of the tumour 2 years ago were severe headaches with vomiting. We don't know what caused the vomiting, but we're very glad it hasn't continued. That said, even 2 years ago, Kol would only vomit occasionally. It happened when the tumour started pressing against sensitive parts of the brain, which forced the brain to adapt and re-arrange itself, which in turn caused the vomiting.

Yesterday, Kol was angry. He was angry at the cancer, at the tumour, at the world, at his sisters, and especially at me for making soup for supper. I don't think I've ever seen him so angry. He was stomping around, slamming books on the floor, scowling and growling. I'm glad that he's finally showing emotion. He's been taking so much of this journey in stride, just accepting what everyone else decides, putting up with the pain, the pokes, the doctor's appointments, the nausea, the hair loss, the cold head, the dressing changes, the PICC line flushes, the diet restrictions, the questions. I'm so proud of him, but I ache for him, too. I wish I could understand what he is feeling, I wish I could read his mind. I have so much to learn from him. There is so much that I want him to know.

When Kol was angry yesterday, we sent him downstairs to bang on the drums. When he came up later, he seemed to be in a much better mood. We're thankful we have those drums. At Christmas, Kol saw a kid just a bit older than him play a solo on a drum set. He loved listening to it, and was waving his arms around with a big grin on his face, pretending to play along. We talked then about getting some drums for Kol, but hadn't done it. Some friends knew how much Kol enjoyed hearing the drums, and just recently decided to go ahead and make arrangements for us to have a drum rental. They've only been here a couple of weeks, but even with the noise, we've appreciated having them. Kirk will head down sometimes to bang on them, and so do all of the girls. I even spent about half an hour experimenting with them one day when I was feeling anxious and worried about Kol. It is surprisingly cathartic to beat up on a set of drums. Annika loves playing them too, however she has to sit on someone's lap in order to reach the drums, and no one really wants to hold her. She has a wicked back swing. We really have to watch closely to avoid getting hit in the head.

Yesterday was a bad day for me, too. Even before Kol got angry, I was angry. Again. I came down the stairs and saw that Kol had fallen asleep on the couch, with another headache. I'm not even really angry at the unfairness of the situation. I'm just angry that Kol is hurting. I'm angry that he might die. I'm angry that we all have to see Kol hurting, and that there's very little that we can do on a moment by moment basis, to help Kol. I'm even angry that Kol's headaches interfere with my plans for me, and that we can't really commit to anything more than a couple of weeks away. I'm selfish - I don't want to see my baby in pain. I hate that there isn't much that I can do. At one point during the afternoon, Annika was fussy, wanting something from the fridge. I opened the fridge door, and the jug of Kol's iced tea (that I had just put away) fell out onto my foot and spilled all over the floor. I just sat down on the steps, and started crying, completely overwhelmed. Annika just put her head on my shoulder, patted my back, and snuggled while I cried.

Kirk, too, has been having trouble concentrating, and being able to focus on work stuff. I think it's actually been better for him in the last couple of days, but last week was tough. It seems that when I'm most upset, Kirk is doing better, and he gets upset on those days when I'm being strong. I don't think we plan it that way, it just happens. We're both wanting to escape lots - just run away. It feels like we've been fighting for so long - it just never ends. I wish the worry - the fighting would be over - but we know that, as long as Kol is alive, we'll always be wondering - always be on our guard. That's a trade-off I'm willing to put up with. I'd rather put up with uncertainty in life, than certainty in death. However, it still is tiring.

Since the headaches aren't getting better, the Dr. in Victoria has recommended that we try using a combination of two alternative treatments. I had researched both of these last year, and they were both at the top of my list of possibilities of alternative options, with DMSO. We were actually in the process of gathering all of Kol's records, and filling in the intake forms to send to the Dr. in Toronto that prescribes one of them when we found the DMSO clinic. I wasn't sure about using it because of the side effects - I'm still uncertain about giving it to Kol. It doesn't feel right - at least not yet. Not like going to Oklahoma did, or like sending Kol to Victoria did. Dr. McKinney can only prescribe this medicine in B.C., so we have to get it through the Toronto clinic. Yesterday, I was trying to gather the information I need to send to Toronto, and I just didn't want to do it. I kept dragging my feet. I think I need more time. But we don't necessarily have more time.

In spite of my uncertainty now, I look back at the decisions we've made in the last few months, and I'm amazed at how things have come together for us. I was uncertain about the side effects of the treatment that seemed the most promising, and then we found the DMSO clinic, which didn't cause the same side effects as the other treatment. We had everything in place for the DMSO, and then Kol had the brain hemorrhage.Looking back, I see that Kol really needed the DMSO treatment, not for tumour treatment, but to help him recover from the bleed. Kol was in a lot of pain after the bleed, and it seemed to be getting worse. He needed more morphine each day, and the Drs. had called in the pediatric palliative care specialist. They told us we could take Kol home, treat the pain and make him comfortable. I think, although there is no way of knowing for certain, that Kol would no longer be alive if we had done that. The improvement we saw from the DMSO was dramatic - although it didn't seem that way at the time. Going to Victoria was also a good choice.

In spite of all of my uncertainty, all of our worry, we keep being reminded Kol is in God's hands. He always has been, and he always will be. We also know that God can certainly heal Kol. We need to continue to trust in God's leading, and in His promises. I fully believe that it was God who made everything come together so perfectly for us throughout Kolbjorn's Journey. He opened and closed the doors that we've had to walk through, and gave us the peace and reassurance that we were doing the right thing. We give thanks for all He's done for us up to this point, for leading us, and for healing Kol. We have many things to be thankful for. I can't explain how or why, but I've believed all along, since before the tumour was found, that Kol would survive this and that God would make things work out. God is capable of performing a miracle, of healing our boy. I know that. It's getting harder to trust with my heart. It's hard seeing Kol in pain, and not being able to help him. It's hard when the doctors at the Cancer Center seem to have given up on him. We're getting tired.

Extra Reading
I have a couple of articles I'd like to share. Kirk sent me a link to this first one, from The New Yorker, about a child's isolating illness. There were lots of things that we identified with in the story. It's perhaps a tough read, but it's worth it for anyone who knows a family, like us, who is dealing with a child's illness, and wants to better understand the emotions and the isolation that we've experienced. It's called "The aquarium".

The second is an older article, but it's about one of the chemo drugs that Kol's oncologist wanted to put Kol on in December, when we learned that the tumour is growing again. After reading the article, I think we made the right choice to not give temozolomide (Temodar) to Kol. The article talks about gliomas, not PNET tumours, but from what I understand, primitive neuroectodermal (the PNE in PNET) cells are closer to stem cells than the glioma cells, which theoretically would cause the same reaction in a PNET tumour. I guess you'd have to read the article to know what I'm talking about.

Thursday, March 29, 2012

Kirk and Kolbjorn are home!

It was a quick, 35 hour round trip to Victoria for Kolbjorn and Kirk (although they were away from home for 48 hours), but they're back now, and we're all very happy to be back together again. The girls and I picked them up at the airport yesterday afternoon. On the drive to the airport, Annika kept saying "Daddy, Kol, home, now." When she saw them come through the sliding glass door at the airport, she ran straight to Kol and gave him a huge hug. It was great to see. Kol had a giant smile on his face when he saw her (and the rest of us), too. You'd think they'd been gone for much longer than they were. Maybe it's just wishful thinking, or maybe I just haven't been paying too much attention to Kol's behaviour at home, but Kol seemed much more energetic, active, and "with it" yesterday after he got home than I remember him being in the days before he left.

We're feeling encouraged by the meeting with Dr. McKinney. Kirk and Kol were at the appointment in person, and I listened in on the phone. Dr. McKinney is a naturopathic oncologist. He provides support for patients who are receiving radiation and chemo, as well as those who, like Kol, are not receiving conventional treatment. I was really quite impressed with him. He knew his stuff, and was very encouraging. He said we've been doing a lot of good things; he was impressed with the medications and supplements we've been giving Kol, however there were a couple of key items missing, and we needed to increase amounts of others. There were also a few supplements that are no longer necessary. He thinks that with the changes he recommended, Kol should be having fewer headaches within a week or two, and he will have more energy. He found that Kol's liver and adrenal glands are showing decreased capacity - the liver damage was most likely from the chemo, and the steroid he was on in January and February probably caused (or at least exacerbated) the adrenal damage. We're now also working on healing these parts of Kol's body.

It's fascinating to me how God created our bodies. Everything is connected. We need every organ in our body to be working in order to be healthy, yet at the same time our bodies are capable of making huge adaptations, and can withstand tons of abuse before we get sick. If we can get Kol's body balanced and working properly, the way God designed it to work, he can fight the cancer much more effectively. That's what I've believed all along. I just haven't really known how to do it.

Tuesday, March 27, 2012

The roller coaster ride continues

It's been another crazy, emotional week; another roller coaster ride. Have I mentioned before that I really don't like roller coasters? I have never experienced so many emotional lows and highs in such a short period of time as I have this past week.

I've always had a temper to match the red hair I had when I was growing up. Sometimes it didn't take much to upset me. I'm ashamed to say, I've spent much more time being angry that I'd care to admit. I wish I were more even-tempered - like my dad - although I suspect that, being a red-head too, he did have his moments. I only ever remember him being angry when we made so much noise so that he couldn't hear the weather forecast on the 6:00 news. We learned quickly not to interrupt him then. I can at least say that I never chased my brother around the kitchen with a butcher knife, like my grandmother apparently did. Since she grew up above her parents' butcher shop, she was probably pretty skilled at using that knife, too. Even though anger is not new to me, I have never felt as angry as I did the day we learned that the tumour was still growing. I spent most of that Friday evening (March 16) and Saturday angry at the unfairness of Kol's situation. Kirk and I stopped at the store shortly after we had received the MRI results, and I noticed a sweet-looking, little, old, white-haired lady enter the store. When I walked past her, I smelled cigarette smoke exuding from her clothes. I was instantly angry that this woman could live long enough to be a sweet-looking, little, old, white-haired lady even though she knowingly chose to smoke in spite of all of the warnings and information about how detrimental smoking can be to one's health, while Kol, who never did anything intentionally to contribute to illness, might never get the chance to become a sweet-looking, little, old, white-haired man. There were times on those days when I just wanted to destroy things - throw a glass vase against a cement wall and watch it shatter, slash tires, break windows - even send a car off of a cliff and watch it crumple - maybe even explode. Maybe I wanted to inflict my pain onto something else. I have never experienced that kind of rage in my life. I don't ever want to again.

On Sunday, Kol, Birgitte and I stayed home from church with the flu. During the day, I kept imagining what it would be like seeing Kol in pain again from the headaches, and not being able to help him. Then I'd think of the thousands of parents, especially those who we've met on our journey through cancer, who have done that - who have watched, almost helplessly, as their children die of cancer. I can't imagine their pain - and I don't want to. I don't want to become one of them. On Monday and Tuesday, Julianna, Mari, Birgitte and Kirk sang in the Outlook music festival. It was a good break from the worry, and it was wonderful to see how much the girls' confidence levels and abilities have increased since last year. On Wednesday, I woke up feeling anxious and needing to get some decisions made. Wednesday wasn't a good day for Kolbjorn, either. He had a headache all afternoon, and needed several Tylenol. Thursday was much better. We got things accomplished, and I was feeling hopeful again. When I really think about it, I don't believe that Kol will die from this tumour. I don't. We were told that two out of three children suffering from an sPNET will die. Kirk said that Kol will be the one in three. I say Kolbjorn will be the one and only. (Or the one?) He will be the one who overcomes cancer in his own, unique, one-of-a-kind, customized way.

On Friday night, we had a family praise and worship time. For a bible reading, Mari chose a psalm at random. It was exactly what we needed to hear. I don't think she could have made a better choice, even if she knew all of the Psalms by heart.

Kirk's sister bought us this CD by Fernando Ortega while Kol was in hospital in January. We didn't listen to it until after we had been in Tulsa for a day or two - which was surprising; often the first thing Kirk does when we get into our vehicle is plug his iPod touch into the the sound system so we can listen to music. This CD was comforting. We all instantly liked it. Once we did start listening to it, we listened to it constantly - which is also surprising; Kirk usually only lets a CD run through once, occasionally twice before putting something new on. We listened to it while driving through Tulsa and Kol and Birgitte both listened to it at bedtime. They still do, actually. Birgitte is sleeping in my room tonight while Kirk and Kol are gone, and she needed to move her CD player to my room so she could go hear it tonight. Whenever I let myself be quiet during the week, I would notice that there were two lines from one of the songs on that CD that I kept hearing again and again. The lyrics are below. I've highlighted the two lines from the chorus that I kept hearing. It kind of felt like God was reminding me to trust Him, and wait for his leading.

I Will Praise Him, Still
When the morning comes on the farthest hill
I sill sing His name, I will praise Him still.
When dark trials come and my heart is filled
With the weight of doubt I will praise Him still.

For the Lord our God, He is strong to save
From the arms of death, from the deepest grave
And He gave us life in His perfect will
And by His good grace I will praise Him still.

Our Next Step
Over this last weekend (March 24 and 25), Kol has been having more headaches again. These aren't just the "flash headaches", but the ones that come and last for a couple of hours, and it seems that only a nap or Tylenol will get rid of these. Thankfully, Tylenol does work. With these headaches came more worry. It's so easy to slip into despair and fear, and, if you're like Kirk, imagine worst-case scenarios. Kolbjorn is also starting to get tired of fighting. When we were in Oklahoma, he said he wanted to die so that the pain would stop. Now, he's just tired.

This morning (Monday) we booked plane tickets for Kirk and Kolbjorn. They will be flying to Victoria tomorrow to see Dr. Neil McKinney - author of Naturopathic Oncology. It's the best book I've read so far on treating cancer. I've read about so many promising treatments and clinics all over the world, but I have no idea which ones will be the most effective for Kol, or which ones are useless. I'm hoping that this Dr. can give us more direction. I will be joining them either by phone, or through Skype. While I'd like to be there, it's not crucial for me to be there in person - the Dr. really only needs to see Kol, so I will stay with the girls. Birgitte needs reassurance that she is important too, and Annika still nurses at night. Mari and Julianna also have activities on Tuesdays. They've missed so many days that I don't want them to get further behind.

Today, I've been feeling excited again. It's amazing how much better I feel when we are doing something constructive and taking action. I don't know if this is the right step, but I believe it is. I guess that is obvious - but, just like when we went to Oklahoma, I have peace about this decision. It was good that we went to Oklahoma, even if the DMSO wasn't as effective against the tumour as we had hoped. It did help Kol recover from the hemorrhaging, and I believe it not only bought Kol more quality time, but it also saved Kol's life. I pray this next step will be as beneficial. It feels like we are being led, slowly, through a dark maze. We can only see a tiny part of the path - that part that is lit by a weak flashlight. We can't see what's ahead, but at least the next step appears solid.
“ Fear not, for I am with you, be not dismayed for I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand.” Isaiah 41:10

Saturday, March 17, 2012

The tumour is still growing

We have the results of Kol's MRI, and the tumour is still growing. In the January CT scan, it was 3.1cm by 3.6cm - it is now 3.9cm by 4.0cm.

We're dealing with a lot of emotion right now - heartbreak, anger, fear, disappointment, denial, sorrow, frustration - and we're not sure what our next step is going to be. Your prayers are appreciated.

Wednesday, March 14, 2012

Scan Day

In just an hour or so, we'll be on our way to RUH for Kol's MRI. While the scans themselves aren't stressful, waiting for the results is a stressful time. A mom of another child with cancer wrote that scan time is like putting a bullet into a gun, spinning the barrel and pulling the trigger, hoping that it doesn't fire. Kirk said that it's more like picking up a random gun and firing it, not knowing if the gun is completely empty, fully loaded, or somewhere in between. Either way, it's a stressful time.

On Monday morning, I woke up feeling incredibly anxious and didn't know why. It took me several minutes to remember that the scan was coming and to realize that that was why I was concerned. Last week, I had a dream that there was one thing missing, one thing that we had to do for Kol, between scans. In the dream, I figured it out, and Kol's follow-up scan was clean.

There are so many treatment options - so many things we can do for Kol, but I know the best thing we can do is pray. Kolbjorn's future is, and always has been, in our Father's hands. When you read this, please take a few seconds to praise God - the God of Abraham, who brought the Israelites out of slavery, who performed countless miracles - for the healing He's done in Kol's body, and pray for continued healing and positive results from this scan. We long for complete healing for our precious son. We give God, Abba, the glory for all He's done for Kolbjorn, and for us.

Friday, March 9, 2012

Youth of the Year, MRI and other tidbits

When I write blog posts, I often have them at least partially written in my head before I sit down at the computer. I've started trying to write blog posts in my head over the last few days, knowing that it's been silent here for too long, but I haven't known what to say. There are so many things that we need to say, and yet my thoughts aren't coming together to form anything cohesive. Here it is anyway. I hope you enjoy it.

Outlook Youth of the Year 2011
Kol has been chosen, by the Outlook Chamber of Commerce as Outlook's Youth of the Year for 2011. Derek Ruttle from The Outlook was here one day last week, and did an interview with Kolbjorn, Kirk and me. The article is in this week's paper (March 8, 2012). Kirk went out early this morning and bought a stack of papers, and Kol enjoyed reading about himself. Kol will be given a plaque at the awards banquet next Thursday - March 15th. I believe banquet tickets are available until Saturday at several Outlook businesses. We were surprised and honoured that Kol was chosen for this. We are obviously very proud of our son.

We have a date for Kolbjorn's next MRI! When we talked to the Cancer Center after we got home, we learned that Kol wasn't on the list for a follow-up MRI. Kol was considered palliative care when we left, so I think they thought he wouldn't be needing any more scans, even though I asked the Dr. before we left if Kol would still be getting an MRI in March, as scheduled. They then put in an urgent request for an MRI, and we now have an appointment for an MRI on March 14. We'll have to wait longer than we had hoped, but it'll be good to know what is happening in Kol's brain. If we see shrinkage of the tumour or even slowed growth, we'll continue with the DMSO treatments. Kolbjorn's last DMSO treatment was on February 23, and we'll most likely have to wait at least a week after the MRI for results, so that means that we'll have a month off of treatment. That feels like a long time, if there is live tumour remaining. Kol is reading over my shoulder - he says "But if there isn't... then we'll start partying." I think that's a great plan. Man, I love that kid!

Kol's oncologist also seems quite interested in seeing the MRI results, too. He seemed surprised that there was so much of a difference between the two PET scans that Kolbjorn had in Oklahoma.

We have received gifts from countess people, businesses, and organizations in order to help with expenses from Kol's treatment and our trip to Oklahoma. It has been overwhelming, humbling, and comforting to know that so many people are willing to hep us out. We're touched beyond words at the kindnesses shown to us. I think Kol's picture has been in the Outlook paper almost weekly since we left for Oklahoma; most of the pictures were of him receiving a cheque.

We want to say thank-you to Kristie Sincennes; Karen Griffith; Cassie Smith and those who donated to her head shaving campaign; the ladies who packed boxes of goodies for our trip; Tia Woudwijk, Amy Reddekopp, Conny Behenna, and Destiny Lockhart; those who donated items to and/or worked at the garage sale and the garage sale shoppers; Riverbend Co-op, and those who attended the lunch at the Co-op; the cooks and bakers who helped fill our fridge and freezer; those who donated to the trust fund account; Steph Murphy and those who attended the steak night she organized; the organizers and participants of the Broderick Fish Derby; the ladies who cleaned our house while we were gone; everyone who has sent cards, gifts, LEGO, e-mails and letters; those who have phoned or left messages; everyone who has given us hugs and words of encouragement; The Outlook; Prairie Centre Credit Union; Outlook Royal Bank; Outlook Scotiabank. This is not a complete list, and I'm sure there are more thank-yous that need to be said, but this is a start.

We also want to thank our families. Thank-you to Ulla and Greg, Robin and Quinten, Steven and Krista, Bo and Miena, Regan, Leif and Heidi - you've all helped in so many ways. You all mean very much to us. To Sandra, Connie and Obert - we cannot thank you enough for all the you've done.

Titanic Exhibit and Science Centre
One of our daughters has been fascinated with the Titanic ever since she first read about it when she was about 8 or 9. She researched it, and read stories about it online, searched the passenger manifest for families, and read through survivor lists for names she recognized from the manifest. When we heard there was a Titanic exhibit at the Science Center is Regina, we promised we'd go. We almost missed it. We went on Saturday; Sunday was the last day. When we told the kids we were going, they found all of our books about it, and even Birgitte asked to go on the computer so that she could research the Titanic. I'm so glad we went. It was very well done. We went to the science center after the exhibit. Kol had fun - he wasn't grumpy, or upset about being there, and we even had to pull him away from an exhibit when it was time to go. Saturday was the first day in a very long time that Kol didn't have an afternoon nap. We went with cousins from Regina, and we spent the evening visiting with family. Kol played with the kids - it was wonderful to see him so animated. The last time we were in Regina, on our way home from Tulsa, he was too tired to play and either slept or read the entire time.

Fun Mail
One day, about a week ago, we got a package in the mail. There is a Grade 9 English class somewhere in Saskatchewan (since I haven't asked for permission to post information about them, I won't say where; if they want to reveal themselves, I'll leave that up to them) who has been following Kolbjorn's Journey. They started reading it, I believe, when they were learning about blogs and blogging in class, and started following it more closely when we went to Oklahoma. I've known the teacher since we were kids -our mothers went to LCBI together and our families have crossed paths often. As an assignment, these kids wrote personal letters to Kol. He had such a blast reading the letters - he even gave up some of his limited Wii time to read them. As he read them, he'd tell me the highlights of each letter, that (kid's name) likes Star Wars Lego too, (another kid) knows someone who has cancer, and (kid #3) has been to Outlook. I'm not sure if I'm proud, as an English teacher, or embarrassed that my home-schooled, 9 year old kid also pointed out spelling and grammatical errors in several of the letters as he read them. Thank-you to this special class. I suggested that Kol write replies to each of the letters, but he seems to think that it might be too much work. We're still scheming about how to answer them. Maybe he can write one, long letter, or perhaps a road trip to visit the class is in order. Kol thinks that is a much better idea than letter writing.

Uncertainty and still feeling lost
We are all (I think) still feeling overwhelmed. It's great to be home, sleeping in our own beds and seeing familiar faces, but we haven't really found any kind of a routine yet, and I miss that. Now that we're home, emotions that were suppressed are coming to the surface. That's a good thing - but it's tiring, too. As soon as we got home, Annika started refusing to put clothes on. I'm sure it's because she knows that, as long as she's wearing only a diaper she will stay home, and she doesn't want to go anywhere. She doesn't want to get in her car seat, either. Birgitte is being "clingy". She wants to be with either me or Kirk all the time. She's worried about being lost, and left behind. She didn't want to go to the aquarium in Oklahoma because she was worried she'd get lost. Kol's been more emotional - he gets angry easily, and he also cries much more easily.

Kolbjorn seems to be doing so much better - he still is improving some every day. He hasn't been as tired, it's been almost a week since he napped in the afternoon. He has more energy, and he's teasing his sisters more. The constant headache he had when we first got home is gone, and he only gets occasional "flash headaches" that come on suddenly, are intense, but only last 5-10 minutes. He's been having headaches like that for a long time - maybe even since his radiation treatments. With Kol appearing to be better, we are all starting to want to get on with life, and start doing all of the tings that we put on hold for so long. I'm feeling pulled in different directions. We need to start doing more school stuff - the kids have been asking to look at more science, and Birgitte really wants to focus more on math (Kol wants to too - he's forgotten a lot of what he knew). I'm motivated to try to catch up on organizing and cleaning that was put on hold while Kol was undergoing chemo and radiation.

There is still so much uncertainty - about Kol's future, about our family's future. We have so many questions and so few answers. Kol appears to be doing better, and we are wanting to find some form of normality. At the same time, we know that everything could change suddenly, without warning, like it did on January 7th, or the day we got the news the tumour is growing. Would we be doing different things today if we knew that the tumour is still growing? I don't know. I want to believe - need to believe - that Kol will live a long, prosperous life. I believe that Kol can be a testament to God's healing power and the power of the human body (that God created), to heal itself, given the proper tools (natural things, that God also created for us.) I am mostly successful in believing that God will heal Kol, and those are the times that I am strong. My faith wavers, though, and I beg God to give me the faith that I need.

While we were away, Kirk's dad moved in to our house for a few days, and did lots of work on our house, in an attempt to get our 3rd level (2nd level? upper basement) finished so we could be finally living in our entire house. We've been working on it for a long time (since before Annika was born), but work got put on hold when our priorities shifted. It was amazing how much work he got done and it feels like the end is in sight. Kirk could be moving into his new home office within a month, and the new bathroom should be usable in a week or two.

Trusting in God
Kolbjorn is so much healthier than he was two months ago. I think it's a miracle that he has improved so much. In spite of all of the uncertainty, we know that we need to trust in God - that He will work through us, and guide us if we let Him. Doors were opening and closing concerning the details of the trip to Oklahoma. It was amazing how the details fell into place, and how we just knew we had to go. I did not feel peace at all until we decided that we were going - and I almost felt euphoric at times during the drive. It was risky, and it couldn't have been easy on Kol to drive while in so much pain. But through it all, I knew we were following God's leading. It felt good. God's been good to us. He has done great things in Kol's life. He has given Kol more life. Praise Him.