Saturday, November 27, 2010

Home again

It's good to be home again. We're back home after round 3 of the cyclo.  The treatments went reasonably smoothly, however Kol was much more tired this time than he has been after the last 2 treatments.  He fell asleep on grandma's couch on Thursday night at 8:30.

Kirk was working on a project on site for one of his clients and needed more time, and I wanted to get some shopping done, so we stayed an extra day.  We're all pretty tired today, but it's good to be home we're all happy to be back in our own beds.

Monday, November 22, 2010

Little things

I started this post in the middle of September, and then forgot about it while we were getting ready for Kol's birthday party. It's time I made it public.

Throughout this whole trial, "little things" have worked out for us. By "little things" I mean things that are really unimportant in the grand scheme of things, but which certainly make things better, or easier in the moment. Even when we were dealing with big problems, God was there, taking care of all of the little things, making them work out for us. It is reassuring to think that if He cared enough to make the little things work out, He can make the big things work out eventually, too. It's been comforting to know that I don't need to worry about those things. I just knew that they would all come together. I don't know how I knew, but I did. And, if the little things fell so easily into place, then I just knew that the big things would, too. I'd like to share some of these things with you.

At the E.R. in Saskatoon, before the tumour was discovered, Kol was being treated for a migraine. When he felt better after a dose of morphine, at about 4:30 am, they decided to send him home. Someone asked Kirk if he could drive home. When he said no, a cot was brought in for him to sleep on. The morphine wore off around 6:00 am, Kol started vomiting again, and his headache was back. It was then that the decision was made to do a CT scan. If Kol had been back at home when the morphine wore off, we might not have gone back to the E.R. right away - and even if we did, we would have had to wait for Kol to be seen again. The tumour wouldn't have been found until several hours later, and we might have had to wait much longer for the MRI, the neurosurgeon, and an operating room. As it was, the neurosurgeon already had the O.R. booked for Saturday morning.

When we took Kol to the E.R., I sent e-mails about Kol's progress, and the doctors' findings to our family. Everyone responded but Obert and Connie, who were on holiday in Europe. We weren't too surprised, knowing that they would have limited access to computers, depending on what services their hotels would have. However, the night before Kol's surgery, we felt we needed to do more to inform them. Kirk was talking to his sister late Friday night (maybe even Saturday morning) and they decided it was important to contact their parents. For the first time that I can ever remember, Obert had given all of the kids copies of their itinerary, with hotel addresses and phone numbers. Kirk couldn't call Europe from his cell, so Ulla called instead. It turned out that it was the perfect time to call them. They were awake, but hadn't left the hotel yet. The pastor from our church, as well as other friends of ours were on the same tour, and were able to support them. The entire tour group gathered to pray for Kol later that day - while Kol was in surgery.

News of Kol's illness spread fast - we are still hearing about groups and individuals that were praying for Kol while he was in surgery, from all over the world. His surgery took place only 36 hours after we first took him to the E.R. I didn't know he was going to have surgery until 5:00PM on Friday - and the surgery was at 8:30AM Saturday. Hundreds of people heard in those 13 hours, and were praying that morning. There was a youth gathering in Edmonton the weekend Kol had his surgery. Many of the attendees prayed for Kol during his surgery, including the youth group my sister was chaperoning, and a group of L.C.B.I. students.

While Kol was still in the hospital I drove home with the girls for a piano recital. On the way home, I had a flat tire. While I would rather not have had a flat tire, I couldn't have chosen a better place to have one. Sixty seconds earlier I was in the middle of a long line of vehicles, following the pilot truck, with piles of dirt on one side, big machines on the other, and nowhere to pull over. If it had been just a few minutes later, I would have been around a curve, and the construction workers that helped me wouldn't have seen me. I would have had to change the tire by myself, and we would probably have missed Julianna's piano recital.

Kol was given a toy light saber just before his radiation started. One stormy night, just after we arrived at Connie and Obert's for the night, the power went out. Kol's light saber gave us just enough light to help us find the candles, matches, and real flashlights.

The times that we were late leaving Outlook because of a last minute phone call, (or last minute potty runs or other typical chaos) were the times that we had virtually no wait for the pilot car on the highway. When there was more traffic through the city than we expected, we found good parking places at the Cancer Center. The times we couldn't find a decent parking spot was when there were 2 of us, so that one of us could get Kol to his appointment on time, and the other could find a parking spot (usually on the top level of the parkade).

When we couldn't take everyone to an appointment (or they didn't want to go), there was always someone available to stay with Birgitte and Mari, or take them somewhere. When we went shopping, there often seemed to be sales on the things that we needed. We got letters, or messages that said just what we needed to hear. When I needed a connection, someone would call me on the phone. We met people at the Cancer Center or hospital that had answers for the questions that were bothering me at the time. While we couldn't always get our pick of appointment times for the radiation, the times we absolutely had to have specific times (because of other appointments) were the times that it was easy to switch. Then there were the radiation therapists who did such a wonderful job of making the radiation treatments easier for Kol, re-arranged their schedule so that he could go to VBS.

When I was really starting to worry about what I would be doing this year for a homeschool curriculum, I got the results of the standardized tests Kolbjorn and Julianna did in June. That gave me the courage to decide to do something unconventional this year, and buy a fun science program instead of a more complete, traditional curriculum. We are all very excited to build our own remote controlled vehicles, hydrogen cell vehicles, hovercraft, kites, and alarm clocks.

This may sound strange, but even the timing of the discovery was great for several reasons. It was summer time, so there were lots of things for the girls to do to keep busy, and the bulk or the driving occurred in the summer. At 3.5 months, Annika was really at the perfect age to be 'hauled' around the hospital. She no longer a newborn, and we had gotten over most of the initial stresses of having a new baby around. She was still small enough that she couldn't roll over, so it was safe to lay her down on the bed when I needed to help Kol, and she was too young to want to play on the floor. Julianna had just started to babysit, and was very eager to help out, which has been a huge blessing, too.

There have been other, fun things, too, like the day we went out for lunch at Jerry's after an appointment, and it turned out to be the day they were giving away free samples of their new gelato and ice cream flavours. On the day we risked taking Kol to the library in spite of his low blood counts, the library was completely empty. In spite of the short notice, everything fell into place extremely well for Kol's birthday party.

We have come across many people that had connections to us - like the doctor who used to work at the plant Kirk's grandpa built, and whose brother went to L.C.B.I., and the nurse whose brother is married to Kirk's cousin. When we went to the zoo, we met someone who recognized me from L.C.B.I. I don't think she's seen me for 20 years, but she still knew my name. We met a family at the cancer center who didn't know who we were, but who had heard about Kol and had been been praying for him since his surgery.

I know that I feel much better when I look at what is working than when I start to ruminate on the uncertainties. We have lots to be thankful for. God is good. I see that when I start to look at the little things. We still don't have answers, many things are still uncertain, but life will go on, and we will thrive.

Sunday, November 14, 2010


On Tuesday, Kristen and I (and Annika) drove in to Saskatoon to meet with the brain tumor support group. I remember noticing posters for the support group when Kol was still in the hospital after his diagnosis and surgery, and at the cancer clinic during his radiation treatments, but this was the first time we actually were able to attend.

I was nervous - I didn't know what to expect, and those of you who know me well know that I don't always enjoy new social situations. It helped that a friend of ours met us waiting for the elevator (she's an event planner and was attending the meeting to discuss upcoming fundraisers for the Brian Tumour Foundation). It also helped that within a few minutes of entering the meeting room, I was called upon to help figure out how to get a laptop connected to a projector and get various things (DVD, photo slide show) working on the laptop.

It really helped when the meeting started, and we got to hear the other members stories - of their own journeys with brain tumors, or for some, their journeys caring for someone with a brain tumor. We had a chance to share our story, and it felt good knowing that the people listening could understand a lot of what we have gone through. It was good to see people who are many years into their journey and still going strong.

One of the members talked excitedly about an alternative therapy that Kristen had recently read about. There were a large number of teachers (former and current) in the group. We also discovered that we were connected to several members via common acquaintances.

But what really cemented it for us was hearing one member comment "They were serving sugar [candy] to cancer patients! Are they crazy?" and seeing many others nod their head in agreement. It seems that whenever we mention to someone (even at the cancer center) that we've cut sugar out of Kol's diet, we get questions and the occasional funny look, but here? They understood! The potluck table also featured dishes made with lentils, quinoa, and organic ingredients.

The meeting ended at 9:15, but we stayed talking for half an hour afterwards. It was a good group to be with, good to know people who can really relate to what we are going through, and we are looking forward to the next meeting in December.

Tuesday, November 9, 2010

We have a date!

We have a date for Kolbjorn's next MRI.  It will be on December 21st.  We were hoping that it would be in November, but it seems the MRI suite is busy, and since Kol is doing well, he can wait.  He is scheduled to start his 4th cycle of chemo the next day, so we won't have to wait long for the results of the MRI this time.

Please pray that the results will be positive.  Obviously, we'd love it if the tumour were completely gone.

Whatever happens, we know that Kolbjorn is in God's hands.  He's shown us that over and over again since May 28th.  When I first started reading about aggressive brain tumours, I read stories about kids that didn't make it through their treatment - in fact, I found that many children died between 5 and 6 months post diagnosis.  My goal for Kol was to make it past that milestone, because I felt that if he made it that far, his odds would be much better.  Five months and two days ago, we received the pathology results on the mass in Kol's brain.   Kol is doing well now, and unless something suddenly goes horribly wrong, he will easily make it past that 6 month mark.  God is Good.  Thank-you for all of your prayers on our behalf up to now, and please don't stop.  There is still an aggressive tumour in Kol's head, and given the chance, it could continue to grow. 

Thursday, November 4, 2010

A cat and a dog and a mouse. Oh - and a piano guy.

I know I've talked about play practice before, but I don't think I've explained what is happening.  Most of our family is involved in Equinox Theatre's latest production.  It is a double feature of two children's plays: 101 Dalmations, and The Aristocats. Kolbjorn and Mari are both in 101 Dalmations, and Julianna is in The Aristocats.  Kirk is the piano guy for 101 Dalmations.  There will be four evening shows and a Sunday matinee, from November 17th to the 21st.    

There have been practices twice a week since early September.  Kolbjorn has missed a lot of practices, due to his house arrest, but he's been working hard at home, practicing his lines and his solo, and listening to the guide vocal track CD.  The director and producer have been wonderful, allowing him to be in the play in spite of all of the missed practices.  He is so excited about the play.  It's great to have something for him to be excited about, and a goal for him work towards.  He has Mari to help teach him the choreography and blocking, and Kirk to help him with the music.  Birgitte has heard the CD so much that I think she knows the music better than Kol and Mari.  Kol told me to say that he definitely disagrees with this statement, however, she is constantly singing Dalmations songs - usually at the top of her lungs.  (Just a side comment about Birgitte - it's been wonderful to see the musical side of her personality again - she'd stopped singing and playing the piano while she was on the anti-epileptic medication.)

The plays were originally slated for the spring, and Kol and Mari had both auditioned then.  The play was postponed to the fall, and then came Kol's surgery.  In the days at the hospital after the surgery, we never imagined that Kol would be able to be in the play.  It's wonderful  - a miracle, really, that he has recovered well enough to be involved.  Another cool thing - some would say co-incidence, although I chose to believe otherwise - is that the performance dates match perfectly with Kol's treatment schedule.  His blood counts should be back in the normal range by the 11th, or 12th of November at the latest, just in time for the dress rehearsals.  He will start another round of chemo (and more house arrest) on November 24th - 3 days after the last performance. 

Tickets went on sale a week ago today, and I've heard that close to half the tickets are sold already.  If you'd like to come see the kids as a cat, a dog and a mouse, we'd love to have a visit.  You can contact The Outlook for tickets, or contact us, and we'll try to get tickets for you.  Our contact info is accessible from the "Contact Us" link on the top left side of this page, or you can just click here.

Tuesday, November 2, 2010

MRI results and more

Kirk and I were just re-reading some of the recent posts on the blog, and we realized that we haven't written about the results of the the MRI that Kol had on September 23rd.

According to the oncologist, there is still a mass, 1 cm in diameter, remaining in the fluid space in Kol's left ventricle.  There is no way of telling if that is just what was left behind, or if it is growing, or if it is shrinking - at least according to the Dr. we talked to.  We'll find out more after his next MRI at the end of November, or beginning December.

The neurosurgeon said that he removed about 90 - 95% of the tumour in the fluid space, and he also said that the tumour was originally about 4 cm in diameter.  Kirk did the math, and what is left would be about 1 - 2% of the original tumour size - assuming that the tumours were perfect spheres, and that they were exactly 4 cm and 1 cm.  This is encouraging to me, at least.  I choose to believe at this point that it means that the tumour has not grown.

Kol had a few headaches again during the last 2 weeks before his second cycle of chemo started.  They are most likely either caused by changes in the tumour size, causing his brain to adapt to the new pressure inside the brain or by gluten withdrawl (there'll be more about this in another post). These headaches are different than the ones he had before his surgery.  These come on suddenly, are quite uncomfortable, but usually go away relatively quickly, too.  Kol hasn't had to take any medication for these headaches yet, but he also has a very high tolerance for pain. 

We were in Saskatoon for the day on October 20th, and Kol fell asleep on the way in to the city.  When he woke up, he was sick.  He was sick again later in the day - again after having napped in the car.  Thankfully he has been well since, however, every recurrence of the tumour symptoms brings new questions and worries. Every new complaint causes concern about chemo side effects, a new growth, or some secondary infection.  I wish others could understand.  I hope none of you will.

I miss the days when a headache was just a headache, and vomiting was just caused by the latest 24 hour stomach bug that was going around town.  I thought the worry would lessen over time, but in lots of ways, it has just intensified.  We have Kol back - he survived long enough to have surgery, and recovered from that and the radiation.  He is handling chemo well.  For that, I am extremely thankful.  In spite of all of this, or maybe because of it, I am really starting to realize that as long as Kolbjorn is alive, the worry will always be there.  We need to learn to live with that constant worry, because it's much better than the alternative.  I want to see Kol get married, be a father, live a productive life.  As the song says, "heaven is a wonderful place" but I'm selfish enough to want Kol to experience what he can here on earth first.  He has so much to learn - and so much to teach me.