Thursday, March 31, 2011


The tickets have been bought, travel insurance has been arranged, housesitting (and cat-sitting, and fish-sitting, and hamster-sitting) has been arranged, and shortly we will be in Arizona for some downtime. The kids are looking forward to swimming, trips to the Phoenix zoo and other attractions. Kristen and I are looking forward to spending time just relaxing and learning to breathe again. The last few weeks have seemed so busy, especially with music festival - we had kids performing in the very first session, the very last session, and what felt like 75% of the sessions in-between. It feels like ages ago that we got Kol's MRI results, not just two weeks.

As a system administrator, "downtime" usually has negative connotations - it usually means that something has broken, and it's something that I try to avoid as much as possible. However, I'm looking forward to this downtime. Downtime is time to fix things that are broken, and this downtime will be good for our family's healing process.

Saturday, March 19, 2011

No more PICC!

After 8 months of receiving daily saline and heparin flushes, having baths with saran wrap around his arm, and being careful when playing to keep from jostling the tube on the arm, Kol had his PICC line removed yesterday afternoon.  It was a very simple procedure - Kol sat with a warm pack on his arm for about 5-10 minutes, and then the nurse pulled off the dressing, and then just pulled out the tube.  Then she put pressure on the hole for about 5 more minutes, put a dressing on it, and it was done.  He kept the dressing on for 24 hours, and then we changed it to  a different kind of band-aid, which needs to stay in place for 2 days. After that, it can be removed, and Kol should be able to have a bath, and could even go swimming again.  He was very good about it, but I know he missed being able to swim in Grandma's pool last summer with his sisters. 

I can't believe how excited I was - still am, actually - to have that removed. I'm more excited about this than I was about Kol's last chemo treatment - or even than I was when I heard the result's from Monday's MRI.  It was a great relief to hear that the nodule remaining in Kol's brain is unchanged - and we were happy to get that report. Even though getting the PICC out was a small thing, it's having a big effect on us psychologically.  The PICC line was a symbol of treatment - like a leash. As long as Kol still had that line, there was a chance that it would be needed - that it would be used, and it would need to be cared for. He's free now. There are no more outward reminders of treatment. I know in my head that it would only take a few seconds to access a vein if he ever needs an I.V. again, and it could be needed at any time, but it might be never.

After so many months, Kol is finally free. We are finding that we can finally start to let go - to let ourselves believe that our son is getting better, and to stop looking over our shoulders. Last night there was a lightness in our house, in our interactions, that hasn't been here for a long time. I'm not saying that we've been gloomy and have gone around moping constantly, because we haven't. I think we've done a good job of being realistic, of accepting that Kol was sick, but not letting that knowledge colour every interaction. I'm saying that now there is an extra feeling of excitement in the air, of hopefulness, relief, and readiness to move on.  Maybe Kirk and I are finally starting to let our guard down and believe that this actually could be the end. We know that Kol might get worse again, but for now, we're just going to enjoy the progress Kol has made so far.

Kol has come so far - and he has handled everything so well, both emotionally and physically.  I'm so proud of my boy! There are no obvious signs of physical or neurological damage.  (To be fair, however, many of the side effects of radiation and chemo are "late effects" meaning that Kol won't lose the abilities that he has, but he may have difficulty acquiring new abilities.) We've noticed in the last couple of weeks that Kol's hair is starting to grow back. There is a bit of fuzz on his head. It's soft, but it's staying. His head is no longer smooth. Birgitte calls Kol "peach fuzz", and then Kol pretends to be annoyed.  He's pretty happy that his hair is coming back.  He probably won't like the new nickname much longer, though. 

We know that we still have a long way to go, but suddenly today I feel like I can start looking further  than just a week or two ahead.  We'll keep being vigilant about Kol's diet for at least 2 years. However, that is a small price to pay for having our healthy, happy son with us.  After all the abuse his little body has endured - throughout the surgery, radiation and chemotherapy - it will take a long time for it to recover. I want to give him the best possible raw materials to facilitate that recovery.

Kolbjorn still has a long way to go on his journey, but this long, rocky climb is hopefully over.  Maybe now we can sit and relax, and look ahead to a more leisurely pace for a while.

We have been so blessed throughout the last 10 months by the outpouring of support we have had from so many people, by the prayers that have been said on Kol's behalf, by the practical help and emotional support we have received, by the gifts we have received.  People who were strangers to us before have become valued friends.  We cannot express how thankful we are to everyone who has helped in any way.

Praise God for the miracles He has done in Kol's life, for allowing Kolbjorn a little more time with us, and for all of the people whose lives have been touched, and hopefully improved in some little way throughout Kolbjorn's journey and struggle. 

This phase of Kolbjorn's journey is over.
Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.

Thursday, March 17, 2011

MRI results

Kol's oncologist called us Wednesday afternoon with the MRI results. In short: no change. While it's not exactly what we were hoping for, it's definitely not bad news. It was also nice to get the results sooner than we had expected.

There is still a nodule in the ventricle space, hanging on the ventricle wall. It's still the same size as it was in the December MRI (which in turn was about the same size as it was in the previous MRI), oval shaped, about 1cm at it's widest, and about 4mm at it's narrowest. There is no way to tell from the MRI whether it's active tumour tissue, dead tumour tissue, or possibly scar tissue remaining from Kol's surgery. The only way to tell would be to go in and take it out for a biopsy, and the neurosurgeon who operated on Kol doesn't think it's worth the risk.

So, we're back to watching and waiting. Kol will have another MRI in 3 months, and in the meantime we'll keep a close eye on him, watching for any headaches, nausea, or other possible symptoms. The good news is that his PICC line will be removed on Friday - they won't be needing to use it over the next 3 months, and there's always a risk of infection, so there's no point keeping it in. We'll be glad to not have to deal with the PICC any more - daily flushes, weekly dressing changes, having to keep Kol's arm wrapped in plastic when he has a bath, etc. And we're definitely glad to not have to deal with chemo and all the extra trips into Saskatoon, especially with the recent jump in gas prices.

This also means that we should have the "all clear" for going to Arizona in April, which will be very nice. Again, thanks to all of you for your prayers and support.

Monday, March 14, 2011

MRI coming up!

It's hard to believe that we're approaching 3 months since Kol's last MRI.  His next MRI will be Monday, March 14, at about 10:00 am. I thought that each scan would be easier once we knew what to expect and became more accustomed to the routine.  I thought that we would be less apprehensive in the time leading up to the scan and while waiting for the results.  I was wrong.  It's been more stressful so far.  Maybe it's because this MRI has even more significance than the last one. There are many things that depend on the outcome of this scan, including future treatment decisions. The last MRI was basically diagnostic, and had no effect on the treatment plan.  This time if there is anything on the scan, Kol's oncologist will meet with his neurosurgeon to determine whether any remnant may possibly be scar tissue, if it requires further surgery, or if what remains is in too sensitive of an area to operate.  The oncologist may also want to/need to consult with oncologists in other centers to determine possible next steps. Because of the possible need for Kol's Dr. to consult with others, we won't get results until the week after the MRI.

The results of this MRI will also determine whether Kol will be able to get travel insurance, and be able to travel to Arizona to visit Kirk's parents in April.  If all goes well, we hope to be able to spend a week or two on holiday.  Kol's Dr. said that we should try to go to Arizona no matter what the results of the MRI, so we'll try to get it all organized. Birgitte's and Annika's passports should be arriving some time next week, and we'll book tickets when we know the MRI results.

The Outlook music festival starts a week after the MRI as well, and the kids and Kirk will be performing. All 3 "big kids" will be doing a piano trio together, Kirk will do a piano trio with Mari and Julianna, and Kolbjorn and Kirk will be doing a duet together. Julianna, Mari and Birgitte will be singing and Julianna and Mari are playing in band. Mari is in the school choir. It would be good if we don't have to miss any performances to get the MRI results. It is a busy time, but the kids enjoy music, and we're trying to keep things as normal as possible.

Kolbjorn is doing incredibly well.  We've noticed that there is some fuzz starting to appear on his head, and today the girls were pointing out that Kol even has a bit of a tummy - he doesn't look quite so skinny.  I'm not sure if he's actually gaining much weight - we'll find out tomorrow.  He's even able to joke about all he's been through.  Sunday morning in church as part of the children's message, the pastor played "Simon Says" with the kids.  The pastor said "Touch your hair." without saying "Simon Says."  Then he asked who touched their hair. Kol pulled off his toque (which he almost always wears, even when sleeping) and loudly exclaimed "I don't have any hair!"  After the laughter died down, the pastor pointed to his own head, smiled and said he didn't have any either.

We pray that the MRI will be clear - that there will be no remaining tumour, no scar tissue, and that there will be no new spots.  We pray for complete healing.  Please pray with us.  We covet your prayers and your support at this time. On Kol's last scan, there was a spot in the ventricle - it was still about 1cm in diameter, and hadn't grown since the previous MRI, and may even have shrunk slightly.  Thank-you for your willingness to stand by us, cry with us, laugh with us, and most importantly, pray with us.  We are still hearing of churches across the country who are praying for our son regularly.  It is humbling, and overwhelming, but we are so incredibly thankful for all the prayers on Kolbjorn's behalf.  We know God is in control, and he has done amazing things in Kol's life, and will continue to do amazing things.

Thursday, March 10, 2011


At the beginning of February, we had a family portraits taken by a local photographer: Carla Chabot.   We'd never met her before, but we have several mutual friends and have seen some of her work before.   We were very impressed with the pictures she took of us.  What do you think?


Carla also surprised us with a photo montage set to music - a very touching song.  I still can't see it without getting choked up.  She has given us permission to share it with all of you, so here it is.  Enjoy.

I've also added some pictures to the "About" pages and the Contact Us page on this site. If you haven't seen those pages yet, you can find the links to them on the upper left side of this page.

Bonus points if you can figure out what the words are in the overlay on the picture of  Kirk and me with Kolbjorn.  It took me almost 3 weeks before I noticed it.  Oops.

Note: I just finished another post earlier tonight, so make sure that you scroll down and see that one, too.  I'm making up for lost time.  Or trying to. 

Wednesday, March 9, 2011

No more chemo or house arrest!

Kol's last round of cyclo started on Feb 16, and his very last scheduled chemo treatment was on February 23.  His white blood count was low (at 2.7) going in to the treatment on the 16th, so I knew that it could be more of an issue after this treatment than after the previous rounds.  It took him longer to recover this time, but as of March 2nd, he was finally able to go out in public again.

The normal range for total white blood count (WBC) is between 5.00 - 15.00 times 10 to the 9th cells per litre of blood (on the hematology report, it looks like: 5.00-15.00 10^9/L). Anything below 5 is low. The count is further differentiated into types of white blood cells - neutrophils, lymphocytes, basophils, monocytes, and eosinophils. For Kol, the neutrophils has been the most important - they are the white blood cells most responsible for fighting off bacterial infection (while lymphocytes deal primarily with viral infection, and eosinophils rise in response to allergic disorders or inflamation). One of the nurses said that once the neutrophil count drops below 1.00 - 1.5, they tell kids not to go to school.  Kol's cranio-spinal radiation was put on hold when his neutrophil count dropped below about 0.75.

Following Kol's 2 day chemo treatment, we give him daily injections of G-CSF, a bone marrow stimulant, which brings the WBC count up substantially. On Feb 23, when we went back for Kol's final chemo treatment, his WBC was 0.37.  The oncology nurse even looked a bit worried when she came to tell us the results of the bloodwork.  She said she had seen lower, but it was pretty low.  By the 25th, after a week of G-CSF injections, his WBC was still only 0.4. By March 1st, Kol's WBC was finally up to 4.5, with several doses of G-CSF remaining. Usually, Kol got 10 to 12 doses of G-CSF.  This time, he got 15. 

We celebrated Kol's new-found (and hopefully permanent) freedom by attending the "Heading for a Cure" music night fundraiser.  It was a fun night - with lots of good music.  There were 4 "acts" or performers, all of whom were connected to someone who has a brain tumour, and all were very talented.  Two of them, Wes Froese and Matthew Kopperud, were friends of ours.  Matthew was the last performer, and all the kids insisted on staying to the end to hear all of his music.  It was worth it. Matthew introduced his first song by saying that it was a song he had written especially for the night, for Kol.  During the second song, I saw that Kol was crying.  He said it was because he was so happy - that the first song Matthew played was so heartwarming (Kol's words - not mine) and full of happiness and joy.  Kol has looked up to Matthew since they first met at Kinasao when Kol was 4.  It was an awesome evening, and a great way to celebrate Kol's new-found freedom. 

Just a note: I have several posts to go up in the next couple of days - to catch up after all of the silence lately.  Be sure to check out the photo post, and the one about Kol's upcoming MRI.