Tuesday, September 27, 2011

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]
The force will always be with you...

Thursday, September 22, 2011

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.

Wednesday, September 14, 2011

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.

Friday, September 9, 2011

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.

Thursday, September 8, 2011

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.

Wednesday, September 7, 2011


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.