The clubhouse is here!

Kol's clubhouse was delivered this morning!

The truck arrives out front

Kol checks it out

Waiting now at the back alley

Overhead lines caused a few delays... 

...but eventually it made it down the alley... 

...and began to back into our yard! 

Lifting some lines in our yard... 

...as it slides into place. 

Almost there! 

FINALLY! YES! 

A happy and excited family! 

Stacie from Children's Wish and Kol

There's still some work to do - the electrical needs finishing and hookup (probably next week), we'll need to build some stairs for the front door, and maybe install some skirting around the bottom - but Kol is already making himself at home, sitting and reading in a beanbag chair. We'll post some interior pictures once we have it looking a little more presentable.

If you're in Outlook this Sunday (October 16), please stop by anytime between 2:00 and 5:00pm for Kol's birthday and clubhouse celebration!

Our sincere thanks to:

• The Children's Wish Foundation of Saskatchewan for making this possible, and especially to Stacie for organizing and co-ordinating everything!
• Scott H and the staff and students of E.D. Feehan high school for building the clubhouse
• Brad's Towing for bringing the clubhouse out to Outlook
• Indigo Books for helping stock the clubhouse's bookshelves

Shopping spree!

Indigo Books in Saskatoon is supplying books for the library portion of Kolbjorn's personal backyard Clubhouse Library. They had gone through Kol's 16 page long Amazon wish list and gathered all of the books that they had in stock, which amounted to about 4 full boxes. Since there was still room in the book budget, Kol got to go into the store in person and choose more books. He had a BLAST! (emphasis added at Kol's request) He loved that we said yes to almost any book he asked for. He even chose a few books just for his sisters. We spent close to 2 hours browsing through the store. The staff was great.

Now we have 7 boxes of books sitting in our front entry, waiting to be placed in the clubhouse when it comes. We've told Kol that he has to wait to read the books until they are actually on the shelves in the clubhouse. He's chomping at the bit to start reading - but we don't really want him to have finished reading everything before the clubhouse actually arrives. Believe it or not, that is a very real possibility, considering how many times the clubhouse has been delayed, and how fast Kol reads.

Quote from Kol: "I couldn't read any of the books in most of the boxes anyway, because the top box is too hard to move. It's too full of books."

We already have several boxes of books that will be moved into the clubhouse when it arrives - books from the shelves in Kol's room, and maybe some of the books the girls have been collecting, too. Kirk is busy scheming about cataloging software that we can use to keep track of what we have. Here's a list of what has been purchased for the library up to now.

We're pretty impressed with the variety of books Kol has gotten so far, and with the books he chose on his original wish list. We'll be working on filling in the gaps as time goes by. Kirk and I have hesitated posting any links to the wish list, but I finally decided to just go ahead and do it now. That way, those of you who don't know Kol that well can get an idea of what he's like by seeing what kind of books he's interested in. And I have to admit I'm pretty proud of the collection of books we managed to put together. Kol created the list almost completely by himself; he suggested an author, a series or a topic, I would find books that fit his criteria and Kol would pick out the books he wanted from those lists - often reading previews or reviews of those books before making a decision. We borrowed dozens of library books, giving Kol a chance to figure out which authors, series, and genres he liked. I admit that I did add a few books (maybe 20 - 30?) that I thought he'd enjoy, (thinking skills, classics, Canadian books) and that I wanted him to be exposed to. He has books about science, chess, knitting, cooking, math, Lego, Star Wars, Lego Star Wars, mythology, history and music. He has Christian books, mysteries, sci-fi, fantasy, comics, reference books, children's books, humour, graphic novels, historical fiction, classic literature, how-to books, devotionals, and even a textbook or two. The English teacher in me is very impressed. Have I mentioned that I love this kid? I do.

Plan C

You are all invited to a party in our backyard on October 16th, between 2:00 and 5:00 pm. Unless we need to make a Plan D. Please disregard any previous announcements or invitations you may have seen.

Kolbjorn wants to have a combination Birthday party and Clubhouse Library housewarming party this year, so we have waited to schedule the party for when the clubhouse is here. It was originally scheduled to arrive on September 29th or 30th, so we planned to have Kol's party on October 2nd. The clubhouse was delayed, and would be delivered about a week later, we were told, so we decided to have the party on the 10th of October. Then, on Tuesday (October 4th), we learned that it would be delayed yet another week at least. We won't know for certain when it'll be coming until October 11th, but we're taking a chance that it'll be here in time for the party on October 16th.

We'll keep you posted - if there are any more delays, we'll update the blog.

Sad anniversary

Six years ago today, my dad died. The day before he died, we celebrated Kolbjorn's 3rd birthday in Saskatoon at the Fun Factory, and then had ice cream cake at Jerry's. After the party, we got a phone call, asking us to come to the home where Dad was - he wasn't doing well. Birgitte and I spent that Saturday night at his bedside with Mom. Dad died after church the next day.

I haven't really thought much about Dad in the last few months; I guess I've gotten used to not having him around. Tonight, however, I'm finding that I really miss him. I wish he had been here, memory intact, throughout Kol's treatment. I remember that he was good at thinking outside the box, or maybe it was just that his box was so much different than mine. I loved just sitting and talking to him, getting him to tell me stories about "the olden days" when I was smaller, and then having more serious discussions as I got older. He was my sounding board when I had tough decisions to make. He would patiently sit and listen as I talked through my reasons for being indecisive, occasionally agreeing with me, occasionally pointing out a different point of view, yet quietly letting me know that it was my decision to make, and reassuring me that he'd be there to back me up, no matter what I decided. Almost always by the end of those conversations, I would know what I wanted to do, and I felt confident in my decision. Looking back, some (many?) of those early decisions were pretty inconsequential in the grand scheme of things - typical teenage angst - yet Dad seemed to take them as seriously as I did.

Tonight, I desperately miss that sounding board. I haven't had it for a long time - Alzheimer's stole that ability from Dad years before he died - but tonight, I wish that he had been here. I wish he had been here with his quiet stoicism, his patient listening ear, his insightful point of view, and his non-judgmental back-up when we had so many decisions to make regarding Kol's treatment. There have been times throughout the last 16 months when I've felt as if I were floundering around, uncertain - even lost. Today, when the memories of Dad came flooding back, I realized that I've been missing my sounding board. I've been longing for a good listener, somewhat removed from the situation, with life experience, to help me sort out all of the conflicting, confusing information and help me come to the best possible solution. My Dad. I long for the confidence I had after one of those discussions with him.

Dad can't be my sounding board any more. I know I can try to imagine what he'd say, and I will. I think I can even guess pretty accurately what he would say. But right now, I just wish he were here to say it himself.

Happy birthday Kolbjorn!

Today Kolbjorn celebrates his 9th birthday, and I am reminded of all the dark moments over the past 16 months where doubt of his survival quietly screamed from the corners of my mind. We are so incredibly blessed and thankful to be able to celebrate with him today, and we dare to hope to celebrate many more birthdays in the years to come.

We're also anxiously awaiting the delivery of Kol's library clubhouse - a 10' x 10' structure that will go into our back yard, with lots of bookshelf space, and a good-sized selection of books to start stocking those shelves. It should be here by the end of this week, and we hope to have a combination community birthday and clubhouse-warming party shortly - we'll have details up here very soon.

And from a year ago, here's a song that a random stranger on Reddit wrote for Kol's birthday - I still love listening to this.

Kol, the force is with you
Kol, to the Jedi code be true
King Kol, inside your lego castle
If you need subjects I'll be your vassal 

It's your birthday Kol, you're one year older
Every day may you get stronger and bolder
It's your birthday Kol, we're here together
Through easy sailing and stormy weather 

Kol, give your lightsaber a swing
Dodge the blasters and hop into your x-wing
[Guitar solo]
[Chorus]
The force will always be with you...

The inside ride

We just realized that we haven't written yet about The Inside Ride. It is a national fundraiser, with events held across the country, benefiting a different cancer charity in each city. The link probably explains it better than I can. It takes place tomorrow - Friday September 23, at Evan Hardy Collegiate in Saskatoon.

Proceeds from the Saskatoon Inside Ride will go to support Camp Circle of Friends - the camp our kids attended in June. It was a good experience for them. They all got to meet other kids who either have or had cancer themselves, or whose immediate family members (parents or siblings) have cancer. The kids all talked about camp for weeks afterwards, and they still are telling us stories. It was cool that there were other kids who were part of the world of sick children - the world that we didn't even know existed before Kol's surgery.

We are honoured to have been asked to be the Tribute Family for this year's ride. We will be the representatives of the camp, and will have an opportunity to speak about how camp has affected us. Kol is thrilled to be giving another speech. Birgitte had originally said she'd also like to talk, but now she is getting nervous.

Keep calm and carry on

We got Kol's MRI results on Monday. In the doctor's words, there was "essentially" no difference between this scan and the last one in terms of the tumor, which is relatively good news. However, the radiologist says that there may - MAY - be a new tiny nodule in the surgical site. The oncologist says that it's nothing to worry about (yet), but that it will be watched closely at his next scheduled scan three months from now.

Good advice regardless of the situation.

We've had a couple days to process this now. I don't think I handled the news particularly well to begin with - it definitely wasn't what we were hoping to hear - but now I feel like I am able to keep calm and carry on. Kol handled the news with typical aplomb - he's quite convinced that it's just the MRI equivalent of a speck of dust on the camera lens. Kristen had some tears, but is quite optimistic, and the girls seemed to take the news in stride. I think we're going to be OK.

Thank you all for your prayers and your encouragement.

Playing catch-up

I feel I need to apologize for not posting much this summer. It's not just that we've been busy, although that is probably part of why there haven't been many updates; I just haven't really known what to say. Things have, for the most part, been going well this summer. I find it harder to write about the good things than the bad. I think of all of the kids we know who are still in treatment, or who are no longer actively being treated because all of the most effective treatments have failed. I think of Violet, Max, Hunter and Nick, who had tumours like Kol's - but whose fights against cancer have ended, and I feel guilty that our child, our family is doing well. It feels like bragging to talk about the good stuff. In my head, I know that it's not bragging - we're just telling it like it is - but at the same time, we don't want to make others feel bad because things are going well for us. I also know that I love reading the stories of other kids with tumours like Kol's who are doing well. It's reassuring to know that there is proof that this cancer can be overcome.

I think I've also been reticent to post about the good stuff because I'm afraid that if everyone knows that we are doing well, that Kol is doing well, they will move on, stop praying for us, stop reading this blog, thinking we don't need them any more. I know I'm like that, and I think most of us are. We all want to help out in times of need, and when we don't think we're needed any more, we move on. There always seems to be a huge outpouring of support when tragedy strikes - lots of organizations sent people to Indonesia after the tsunami there, or to New Orleans after Katrina, but we back off when the crisis is over. I know it is normal for support to come in waves, but at the same time, I still crave the support. It is wonderful knowing that we aren't in the fight alone. I still love hearing people tell us they've been praying for us or Kol, and still are. I love it when I see that we still have lots of people checking the blog regularly. I love getting e-mails and reading all of the comments on the blog. We still need you. We still covet your prayers, your friendship, your support.

As I said, Kolbjorn has been doing really well; he's gained weight and grown taller, his hair is back, he's been running around, swimming, teasing his sisters, reading books to Birgitte and Annika, and it feels good. It warms my heart. I feel like my heart is going to swell so much that my chest would explode. I've loved watching Kol be a normal kid this summer (or maybe a better way of saying it is that I've loved seeing Kol being himself again.) I've loved watching the kids spend time together and play with friends and cousins. It was even good to see Kol hiding in the cabin; while his sisters were tubing and going for rides on the boat, he was most often inside or sitting on the deck reading. He's kind of like his dad that way.

We spent about 10 days at Christopher Lake and Kinasao this summer. Our family attended family camp over the August long weekend. It was good to relax and spend time with friends. Pastor Sid Haugen led the bible study, and I really appreciated the discussions we had. I think Kirk did, too. The kids had a blast. Even Annika, who is normally quite uncertain around people she doesn't know well, started outgrowing her shyness and even spent most mornings with the babysitters. After family camp, Kolbjorn and Birgitte attended day camp. They also enjoyed that - there were lots of people they already knew there - including several cousins, friends from church, and Rachel - Kol's best friend from camp.

We got home in time to help out with VBS at the church. Julianna and I were crew leaders, Mari, Kol and Birgitte participated, and Kirk was Chef Pierre Mon Frere - a character in an ongoing skit throughout the week. Annika spent most of the mornings with Kirk, in between show times. After VBS, Julianna and Mari took off to Kinasao again for skills camp. They had a blast, as usual.

This summer has also been a time for emotional healing; for processing emotions that were suppressed, or too hard to face before. I have cried much more this summer than I did last year when Kol was going through all of the treatments. Last year, we felt we were being carried through it all. Like in the poem the poem "Footsteps" - God was carrying us then. This year, there have been lots of quiet moments when I look at the kids watching movies, playing a game together, giggling, reading books to each other, or even fighting with each other and I suddenly realize how easily that moment never may have happened. How close we were to never being able to experience the joy or emotion of that particular moment. How close we were to losing our son. It hits literally me like a ton of bricks, takes my breath away. The tears come and I can't stop them even if I wanted to. It's been a tough, emotional summer, but it's been good, too. I expect that, for the rest of Kol's life, we will always be aware of the possibility of a relapse. The fear and concern will always be at the back of our minds, and every headache will be more than a headache. I didn't expect, however, to still be feeling the emotional aftermath of Kol's surgery and treatment so intensely over a year later.

The big plans I had for getting lots of things accomplished this summer (like finishing the renovations on our house so Kol wouldn't have to share a bedroom any more, and yard work that was neglected for the last 2 years) took a back seat again, this time to the emotional healing that we all had to do. We've tried to spend more time together just as a family. I know that I have been craving more time with Kirk and the kids, and the kids have all been asking both for more one-on-one time with us and for more family time together. They've also been needing more snuggles and hugs. I suspect we've all needed reassurance that we're all important, and we've needed to re-connect. We've needed to catch up with each other. As a result of spending more time together, we've been able to have some much needed, heart-to-heart conversations. On Wednesday, we talked to one of the social workers we know from the cancer center, who told us that it was obvious that we talk with our kids. As a result, our children appear have adjusted well to Kol's illness. It was wonderful to hear that from someone who has seen lots of families, and sick kids and who knows what they are talking about.

Edited to add: Kirk just put up another post yesterday, too - don't miss it. If you can't see it, click on "Kolbjorn's Journey" at the top of the page, and scroll down past this post to see it. Or click here.

A busy day

Wednesday was a long day, but overall it went well. We arrived at RUH around 7:20am without incident - despite my fears, there was no feeling of hostility or dread upon our arrival at the parking lot. We got through admitting quickly, and Kol went into the MRI around 8:00am. By 10:00am, we were at the cancer center for bloodwork and a routine checkup, and by noon we were on our way back to my parents' house where the rest of our mob was staying. One more run back to RUH at 3:00pm for an audiogram (as certain chemotherapy drugs can cause hearing loss), and then we were on the road back home. We stopped in Vanscoy to have supper at Robin and Quinten's restaurant, had a great visit with them, then got home and got the kids to bed. Eventually.

In all my feelings of anxiety Tuesday night, I forgot just how much we appreciated the staff at the Cancer Center. It was like meeting old friends again when we arrived. The staff there all commented on how much hair Kol has, how he's put on weight, and how much taller he is. Strangely enough, it almost felt like a homecoming. It was definitely not what I was expecting to feel, and it was very welcome.

Kol was great. He was thrilled to see the staff at the Cancer Center again, and even managed to handle two "pokes" - one for the IV for the MRI contrast, and a second one for the bloodwork at the Cancer Center. Back in the early days of his treatments last year, before he got his PICC line, the "pokes" were very traumatic for him (even with a topical anesthetic cream applied beforehand), so we were especially proud of how well he took the needles today. It was also great to see Kol chatting and joking with the staff - he was so lively and animated, and he looked like he was among old friends.

The bloodwork and audiogram results were all good, so all we're waiting for now (as usual) are the MRI results. Kol's oncologist said we should probably hear from him by Friday with those results. Time to be patient.

Uneasiness

It's the night before Kol's MRI, and Kristen and I don't much feel like sleeping yet. I'm tired, yet full of nervous energy. Right now I'm dreading the thought of driving into the hospital parking lot. It's been two and a half months since the last time we were there, and I've suddenly noticed that it feels like hostile territory. This is a new feeling for me - there have been other times where I've felt uneasy about returning to the hospital, but there have always been feelings of familiarity to counteract it, often even feelings of almost homecoming. Now, as I think about tomorrow morning, all I want to do is run away, avoid it.

The last two and a half months have been good for us, and it's been easy to forget just what Kol (and all of us) have been through in the last sixteen months. When Kol was in treatment, I remember a feeling of shock and unfamiliarity when I saw a picture of Kol before he got sick, with a full head of hair. Now, I've noticed similar feelings when I see a picture of him without hair. It's like I've put this experience out of my mind, like a bad dream or something. Our life has felt much more "normal" lately - no doctor appointments, no big cancer fundraisers, no daily PICC line maintenance, no regular bloodwork, no quarantine times at home waiting for Kol's immune system to recover.

Maybe that's what is affecting me tonight. The reality of Kol's scan tomorrow is a blatant reminder of what we have been through. It can't be ignored, no matter how much I want to. And then we have to play the waiting game again - waiting to hear what the MRI shows, waiting to hear if our lives will get turned upside-down again, waiting to hear if our son will have to endure more hardship. My only hope and prayer is that the scan shows nothing of concern - no growth of whatever remains of the tumour, or finding that it has completely disappeared.

Your thoughts and prayers are welcome - for Kol's tests to come back with good news, and for our family to find peace of mind, peace of heart, and patience while waiting for the results. Thank you.