Support

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.

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. 

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.

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.

Second cycle of Cyclo started

Try saying that 10 times fast.


It's been a while since we've posted;  I'm sorry it's taken so long.  I have started a couple of posts, but haven't gotten them polished enough to actually post them.  I hope we're not losing readers because of the long silences - we really do appreciate all of you who read this blog, and who are keeping us in your thoughts and prayers.  We also really appreciate all of the comments, letters, e-mails and support we receive from all of you.  It helps us to know that we aren't alone, and that there are so many people who also care about Kol and our family.


We interrupt this post for a fun story . . .

Just now, as I started writing this, Kol told Mari that once his Cancer is over, he'll have 2 jobs - one as a sugar-free ice cream salesman, and the other will be as the first Cancer Doctor to invent a pill that people can take after radiation treatments, which will destroy the Cancer.  The radiation (he says) will destroy the outside of the tumour - the part that is blocking, or protecting the part of the tumour that is susceptible to the pill.  He also said that he wants to be the youngest Cancer Doctor that ever lived.  He then told me that he wants to be a naturopathic doctor, too, but he wants to be able to have access to a place where they can do MRIs.  I told him maybe he can figure out a way that he can combine the two.  His face brightened at that idea, and then he said that he'd have to learn how to do lots of equations.


And now back to the planned message . . .

We just spent the last 2 days in Saskatoon at the Cancer Center, where Kol got his 3rd and 4th doses of Cyclophosphamide (cyclo for short)- the chemo drug that he's been getting on the maintenance cycle.  Kirk has a post planned that will explain the treatment process in more detail, so I'll leave that to him.  We are back at home, and Kol is doing surprisingly well.  Last time, after the 2 days of cyclo, Kol was tired, and we expected this time to be worse - but he was feeling good enough to go to his play practise last night, and, aside from looking pale, he seems fine today. 


The cyclo damages the bone marrow, which produces white blood cells, which in turn fight infection.  White blood cells live approximately 5 days, so Kol's white blood cell counts will drop steadily over the next few days as the oldest cells die off, and as his body isn't able to produce new white cells.  They reach the lowest levels around days 7-10, and then should start to recover again.  Last time, Kol's counts were up in the safe range by day 14, so we hope it'll be about the same this time.  Today, we start giving Kol sub-cutaneous  (just under the skin - not into the blood stream) injections of G-CSF, or filgrastim, which helps stimulate the white blood cell growth.  He will get daily injections for a minimum of 7 days, or until his counts are high enough again.  He got 12 doses last month.  At the Cancer Center, Kol had something called an encephlon inserted in his arm, near his PICC line.  The G-CSF is injected into that, so he doesn't need to get poked every time he gets it.  We call the encephlon a mini-PICC.  The bad thing is that the encephlon only lasts a week, so he'll need a new one next week.  Two pokes are still better than 12.


We'll be starting another round of "house arrest" for Kol in the next couple of days.  It's a good thing that Kol is such a home body - he doesn't really miss not being able to go out too much - although I think he does miss Sunday School and play practise. 


kol says he does not miss SS and play practise!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mom dis is kol typing!


I guess I should learn not to leave my computer unattended, and unlocked.  I stand corrected.


The more I learn about the amount of abuse our bodies can withstand, the more amazed I am at the way God created us.  Doctors can't heal us - our own bodies do that.  We humans still don't understand all of the processes involved in life, health, or healing - but God does.  How cool is that?

Life just keeps on keeping on

It's been a little while since our last update, so here's a quick glimpse at what's been going on with our family:

Kol recovering from chemo:

Kol has been under virtual "house arrest" the past two weeks, as his immune system took a big hit from the chemotherapy. Fortunately, his blood counts are back up again (as of Wednesday morning), so he'll be able to get out of the house again - go to rehearsal for "101 Dalmations", church, shopping, etc. Other than that, he's weathered this first round of chemo pretty well. Provided that his immune system continues to recover, he's scheduled to start the next round at the end of October.

Birgitte's journey:

Sometimes it feels like we could start a second blog to talk about Birgitte's issues. We've finally gotten her weaned off the clobazam, and in the last week we've seen a lot more of the "old Birgitte" - her eyes seem brighter, she laughs more naturally, she's been less impulsive, she's listening better, she's started reading again. She's still not totally back to her old self, but there is definite improvement. She's completely off any medication at the moment, and will likely stay off for at least a few more weeks before we consider trying a different drug. There is a higher risk of her having seizures, but we're relatively comfortable with that risk for now - it's been so encouraging to see her old personality start to return.

This old house:

I don't know if we've mentioned this much on the blog, but we've been in the middle of renovations and repairs in our basement most of this year - actually, the renovations have been ongoing for many years, but we had flooding in our basement just before Christmas that set us back a ways. The end is finally in sight for the lowest level - the electrical work is finally done, the flooring is coming together, the drywall should be done soon, and with any luck we'll have the two oldest girls moved down to their new bedroom before the end of the month - nearly a year behind schedule, but better late than never! Once the basement is done, we'll start working on the next level up - we're hoping to put in a reading/homeschool room, a new office (so the current office can be turned back into a bedroom), and better storage space. We're really looking forward to being able to live in our whole house, not just the top half!

Family matters:

Our family has been through a lot of change and stress this year, with Kolbjorn's diagnosis and Birgitte's medication-induced personality changes and behavior problems, with the new baby (who just turned 8 months old, where did the time go?), with crazy travel schedules, with all the kids homeschooling, with us all crammed together in half of our house... The cracks are beginning to show. There are lots of short tempers, lots of easily hurt feelings, trouble falling asleep and trouble getting out of bed, lack of motivation, focus, and energy. The fact that we're aware of what is happening is a good first step, but we're not exactly sure what the next step should be - family counseling perhaps? I'm sure that our kids are at least as worried and scared as Kristen and I are about all that has happened, and all that might happen - we need to find a way to work through this all so that it doesn't poison our family relationships. We're just not sure where to start looking for help - any suggestions would be welcome (in the comments, or email Kristen if you don't want to share publicly).

Prayer requests:

• For Kolbjorn's continued healing, and for him to tolerate the next rounds of chemotherapy well
• For Birgitte's continued healing, that she doesn't have any seizures while she is off medication, and that we will be able to find something that works without adverse side effects
• For our family's emotional well-being, that we can all find healthy ways to work through our fears and worries
• For the completion of our basement renovations!

Thanks again for all your support and encouragement, and hopefully we'll get back to posting more frequently!

So far, so good

Maintenance chemotherapy started this week, and so far Kol seems to be weathering it quite well. We spent pretty much all day Wednesday and Thursday at the cancer clinic in Saskatoon, staying at my parents' place overnight to avoid extra driving. The only adverse side effect so far has been some nausea, which seems to be well controlled by ondansetron (the same anti-nausea medication he received during radiation treatment) - he felt sick late Wednesday afternoon, but once we got him a dose of ondansetron he was fine again. There will probably be a bit of a learning curve again, figuring out what medications need to be administered at what time, but it shouldn't be too steep.

We're still going to have to keep a close eye on his blood counts, especially his white blood cells. As Kristen mentioned in the last post, this chemo drug is going to have a significant impact on his bone marrow, so he'll probably be house-bound for the next few days until we know that his immune system is healthy enough to be out and about. It looks like he'll be getting blood samples taken three or four times over the next three weeks, so we should be able to stay on top of things there. Hopefully we won't have to deal with too much "cabin fever"!

We get to stay home now until next Wednesday, when he goes back to the cancer center for a dose of vincristine (the "milder" chemo drug). There are some other things he needs before then (daily doses of a drug to help rebuild his bone marrow, blood tests), but those are all things that we can either do ourselves, or else get done at the health center here in Outlook.

Thanks again for all your prayers and encouragement!

The holiday is over

I have never liked the way I feel at the end of a break.  This ending is worse than most.  It's been wonderful being at home, getting back into a routine, being normal.  Aside from his lack of hair, no one would guess that Kol is sick.  He is still Kol.  He is taking piano lessons, is practicing his lines for his part (Sgt. Tibbs) in "101 Dalmations"  and begging to do more chemistry experiments, or play on the Wii.  It has been easy to pretend, or forget (however briefly) that Kol is sick.  We've been more worried about Birgitte the last few weeks than about Kol.  Now, the pretending is over, and we need to face reality again.

Kol had an MRI on Thursday, the 23rd.  He did an awesome job - he was scheduled during a time when they don't have an anesthesiologist in the MRI suite, so we were a bit worried that he would be scared, and that they'd have to stop the MRI.  They have special goggles and earphones for kids, so they can watch a movie during the procedure.  Kol got to bring a favorite movie along, so he chose Star Wars.  Big surprise. :-)  He did great - and was very proud of himself for not moving.  The MRI staff were impressed, too - at least that's what they said.  Maybe they were being polite.

This MRI will be the first picture of the tumour since just after the surgery.  There will still be lots of swelling because it takes a long time for dead cells to be removed from the brain so this MRI will only give the Doctors a partial idea of what is happening in Kol's brain. There will be another MRI at the end of November, and the two MRIs combined will provide more information about what is happening with the tumour.  We'll find out the results when we meet with the oncologist on Wednesday.

Kol starts his first round of what they call Maintenance Chemotherapy this Wednesday.  There will be six 28 day cycles in total.  Wednesday (September 29) will be day 0, Thursday will be day 1, and then day 28 becomes day one for the 2nd cycle.  On days 0 and 1, Kol needs to be at the Cancer Center from 8:00 until 4:30.  He will get IV fluids, the chemotherapy drug, and another drug that will protect his GI tract from the chemo drug on both days.  It can cause internal bleeding if the other drug is not given.  Fun stuff.  It is also very damaging to the bone marrow, so we will most likely be on 'lock down' for a while again while his blood counts are low.  We can go home again on Thursday night, until day 7 (the following Wednesday), when Kol gets another dose of the chemo drug he got while having radiation.  He will have occasional blood work done between day 2 and day 28, and we will have to give him daily injections of a drug which is supposed stimulate the bone marrow while we are at home - or we could take him to the medical clinic here to get it done, if we need to.

Kol will be getting potent drugs - poisons, really, which we hope will kill the cancer before it hurts him too much.  We really covet your prayers again.  Please pray that:

• Kol weathers the chemo well 
• that he won't suffer the more serious side effects of the drug - especially the long-term ones 
• for Kirk, me, and the girls in our roles as supporters and watchers
• for family dynamics and strengthened relationships
• that we will soon get to see the real Birgitte again as her medication is reduced
• that we will be able to make good decisions
• for healing

Thank-you for your prayers and for all of the support you have given us in so many ways.
Kristen

Happy Birthday Kolbjorn!

Eight years ago we welcomed our son into the world. On Saturday, we celebrated with friends and family. Lots of friends and family. We didn't actually do a headcount at the party, but we started going through names of people that we remembered seeing at the party, and came up with over 50 kids and at least as many adults. A number came in costume - Jedi knights, Darth Vaders, bounty hunters, clonetrooper, princesses, droids, and Ewoks all made appearances (although we didn't get pictures of many of them - if we were to do this again, we would make sure to get someone to take more pictures, we were too busy visiting and trying to keep things organized!)



The stormtrooper piñata didn't work out as well as we had planned - the glue gave way after only a few hits. The kids still had fun scrambling for all the toys, though, and in a way it was a blessing that it broke when it did - it would have taken forever to give 50+ kids all a chance to hit it.


In the time between the cake and the piñata, we set up a bunch of activities and games for the kids, including LEGO building contests, Star Wars coloring sheets and papercraft, and "Pin the X-Wing on the Death Star".

It was a very memorable occasion. Thank you to everyone who was part of it!

It's party time!

In the early dark days of Kolbjorn's diagnosis, there were times that we wondered if he would live to see his next birthday. What a long way we've come from there! Kol's birthday is just about here, and so we're throwing a great big party - to celebrate his 8th birthday, and to say thank-you to everyone who has kept Kol and our family in their prayers, encouraged and uplifted us, and supported us in so many ways over the past four months. In Kol's words, it's a "birthday slash thank-you slash anyone-can-come party". Consider this your official invitation.

The party is Saturday September 25th from 2:30 to 4:30 at Bethlehem Lutheran Church in Outlook. Please consider this your invitation to come and join us - there will be games and activities for the younger folk, and fellowship (that's Lutheran-ese for "coffee and treats", for those not in the know) for the rest of us. Kol wants a Star Wars theme to the party (at least the kids part of it), so if you want to dress up as a Star Wars character, go for it - and if not, that's just fine too. Gifts are unnecessary - if you feel compelled to part with some money on this occasion, there are a number of charities that could use it more than Toys 'R' Us (see the bottom of this post for our suggested charities).

To hear this information presented in a much more rambling fashion, please watch the video below (with apologies for poor video and sound quality again). See you at the party!



Suggested charities:

• Preston's Road Race: supports families dealing with childhood illnesses, in memory of Estevan's Preston Meyer who died at age 10 from cancer. An annual walk/run is held as a major fundraiser. (Contact information will be posted shortly)
• Canadian Cancer Society: www.cancer.ca
• Children's Hospital Foundation of Saskatchewan: www.childrenshospitalfoundation.sk.ca
• Children's Wish Foundation: www.childrenswish.ca