Thursday, December 30, 2010

MRI results are finally in

We got Kol's MRI results this morning. There isn't really any big news - the tumor hasn't grown, it may be slightly smaller (but not significantly). There isn't any way to tell from the MRI how much of the tumor is dead tissue or how much of it might still be active. There will be another MRI in about three months (hopefully late March or early April, depending on how the radiology department scheduling is).

Our take on the results? We're relatively encouraged by the results - while we would have loved to have seen it significantly smaller (or completely gone, in a perfect world), we're glad to see that it hasn't grown. We'll just continue to be patient, and have faith that it will all work out in the end. Oh, and try not to get ourselves quite as anxious about the next MRI.

Tuesday, December 28, 2010

Christmas Highlights

Kirk's last post about Christmas illness seemed so depressing that I decided I need to counteract it with some of the positive parts of our Christmas.  It was actually a very good time, in spite of the illnesses. 

None of us were sick for very long - just a few hours, really, and Kol was really only sick for the drive to Regina - probably because we thought he was sick from the chemo, and gave him some of his anti-nausea medication.  He never got a fever, which was a relief.  It was actually a good time for him to be sick - he still had a bit of a immune system.  The chemo attacks the bone marrow which temporarily stops producing blood cells.  It seems to take about a week before the bone marrow starts to recover and begin to produce blood cells again.  However, the blood cells live approximately 5-6 days, therefore for the first few days after treatment, there are still some white blood cells available to fight off infection. If he were to get sick tomorrow or Thursday, when the old cells have died off, and very few new ones are being produced, it would be worse. 

We spent Christmas with family, which was great.  We had a Christmas supper with the Ulvens before we went to Saskatoon, and we were in Regina with Kirk's family for Christmas Eve and Christmas Day.  We also got to spend time with the Ulvens once we got back.  The kids got to spend lots of time with their cousins, aunts, uncles and grandparents. 

I asked the kids on Sunday what their favourite part of Christmas was.  I loved their answers.  One of the girls said that her favourite part was playing a game with one of her cousins.  For another, Christmas supper was the highlight.  Another said she loved being with cousins, and her favourite present was the bag her cousin had sewed for her.  Kol's favourite part was watching everyone's faces as they opened their presents.  I think it's cool that they all appreciated the non-commercial things - people, togetherness, thoughtfulness - as opposed to the things they got.  I think their priorities have been affected by Kolbjorn's cancer and Birgitte's epilepsy, just as mine and Kirk's have been.   The big girls especially are searching and questioning.  We've had some cool conversations with the kids in the last couple of weeks about Christmas, it's origins, and how both the church and society observe the season. 

Kirk told me a couple of days ago that the phrase "Tidings of comfort and joy" from "God Rest Ye Merry Gentlemen" keeps running through his mind - like a motto for this Christmas season.  We've been craving both comfort and joy for the last few months, and we were able to find some of both throughout the holidays.  We pray that we will continue to find comfort and joy throughout the new year. 

We also hope and pray that each of you will experience comfort and joy, that the new year will be full of blessings for you, that you will prosper and grow in many ways, and that you will all come to know Jesus in a more meaningful way.  If we can be part of your growth, or if we can be of service to you in any way, please let us know.  We cannot thank you enough for the support you have given us, through your prayers, gifts, letters, comments, e-mails and more. We love hearing from you, and eagerly check for new comments and messages. 

God is good.  Life is a wonderful gift.  Let's live it to the fullest, resting in God and remembering His goodness in sending Jesus to be our savior. 

God rest ye merry gentlemen,
Let nothing you dismay
Remember, Christ, our Saviour
Was born upon this day
To save us all from Satan's power
When we were gone astray
O tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy

Monday, December 27, 2010

Home sweet home again

Sigh. It all seemed like it was going to work out. Nobody got sick overnight Thursday, so we figured that we were over the flu, and OK to go to Regina on Friday. We should have known better.

Friday morning, as we were getting ready to load up, Kol started feeling sick. We got him some ondansetron, thinking (wishfully) that it was just the chemo. About five minutes after leaving the house, he got sick - thankfully, we were thinking ahead enough to have a bucket along for such an eventuality. We stopped at a gas station, and while I was pumping gas, Kristen went inside to rinse out the bucket. By the time she made it back out to the van, Kol got sick again, all over his jacket and pants.

Thankfully, this was also the point where we were meeting up with my brother (to drive to Regina together), and were already planning on passing some of the kids over to his vehicle, so the three older girls switched cars, Kristen got in the back seat to help Kol clean up, and we were back on the road.

The rest of the trip was relatively uneventful, and we thought (wishfully, again) that we had seen the end of the flu. We had a great meal with the family, the kids put on a nativity play, presents were opened, fun was being had... and then Julianna got sick. And then Kristen got sick. And both of them were up through the night being sick, although it didn't seem to last as long as it had lasted for the others.

So, by late Saturday morning, Kristen and Julianna were feeling better, and I thought (wishfully, yet again) that should be it for the sickness. Wrong. Saturday afternoon, I started feeling chilled. I climbed into bed, fell asleep, and then just before supper time, I finally got sick. Fortunately, it didn't seem to last as long as it had for the others, and I managed to get a half-decent sleep that night.

Sunday saw an uneventful trip back home to Outlook, a visit with Kristen's sister for her birthday, and some quiet time together as "just us". As good as it was to be with family this past week, it was even better getting back to home, sleeping in our own beds.

We'll be back in Saskatoon for Kol's treatment on Wednesday (and, hopefully, his MRI results).

Thursday, December 23, 2010


We still have no information from Kol's MRI, and it's likely we won't hear anything until his next chemo day next Wednesday. I'm not sure if the results are delayed due to the holidays, or if it normally takes this long for the results and either things were unusually quick last time or (probably more likely) we are remembering it wrong. Either way, it looks like we just have to continue being patient and living in suspense for the next week.

Speaking of suspense, we can now continue playing the "Who's gonna puke tonight?" game with our remaining contestants - Julianna, Kolbjorn, Kristen, and me. Our last winner, Annika, kept us on our toes from about 1:30am until 6:30am today. There's nothing quite as much fun as a sick kid, except for a sick kid who isn't able to give you enough warning to get a bucket in front of them.

I sound like I'm complaining here - yes, we're feeling quite tired, and a little frustrated, but really life is still pretty good. Kol is still in good health, and we're actually optimistic that he's going to avoid this bug - the nurses at the cancer center told us that the kids in treatment somehow manage to be less susceptible to the flu, so that bodes well for him. With any luck, we'll all be in good health for Christmas Eve.

And seeing as this is will probably be our last blog post before Christmas Eve, I just want to wish you all a happy Christmas. God bless you all, and thanks so much for your love, prayers, and support this year.

Wednesday, December 22, 2010


It's been a long day - actually, it's been a long night and a long day. By Tuesday afternoon, Mari was feeling better, at least enough to travel to Saskatoon with us. Kol's appointments Tuesday afternoon went well, as did his MRI. But then things started to happen. Birgitte woke up around 1:30am Wednesday morning complaining that her stomach hurt, and by 2:20 she was throwing up, which continued until about 6:30am. We got to the cancer clinic on time (around 8:30am) and got chemo started, but weren't able to meet with his oncologist until close to noon (we often meet with him before the chemo is started), at which point we discovered that he still hadn't received the MRI report from radiology, and probably wouldn't get it until later in the afternoon or else Thursday.

So, we are feeling tired, and I am still feeling anxious about the MRI results. Kristen told me that these experiences build patience, which reminds me of all the things I've been told over the years that build character. I'm either in the process of building the patience of a saint, or I'm going to lose my mind. Well, no, it'll probably be a bit of both.

On the plus side, it should be pretty easy for me to fall asleep tonight - I've spent all day practicing. We are almost guaranteed to get the MRI results tomorrow. And so far, no-one else has complained of tummy troubles.

And before anyone else says it, I am well aware that I have very little mind left to lose, thank you very much. :)

"Today is gone. Today was fun. Tomorrow is another one." - Dr. Seuss, "One Fish Two Fish Red Fish Blue Fish"

EDIT: aaaaaaand here we go for more fun. Annika puked all over our bed at 1:20am. Nothing like laundry and showers in the middle of the night to make for a good night's sleep. Also enjoying the fact that she's the only one who can't give us any real advance warning of puking, so likely to be enjoying more laundry as the night continues. Hooray.

Tuesday, December 21, 2010

Colds, flu, new plans

We're just getting ready to go to Saskatoon.  I'm finding it hard to think about anything other than the MRI.  We're more worried that we thought we'd be; certainly much more that we were for the last one.  We knew last time that the last MRI wouldn't tell us much.  This one is much more conclusive.

Kol has had a cough since his radiation - the radiation probably caused some irritation.  He usually only coughs a bit in the morning and evening, if he goes inside/outside, and if he runs.  It's gotten worse in the last few days.  He had trouble sleeping last night, and woke coughing several times.  I have also developed a cough and congestion over the weekend.  We don't know what this means for the MRI.  The coughing might prevent Kol from being able to lay completely still, and they won't sedate him if he has any chest congestion. 

Mari ended up with the flu last night.  It is probably the worst time to get it.  She is upset that she has to miss the OES concert.  She would have been singing in the choir and playing with the band, but she was awake much of the night and has been sleeping most of the morning.  Also, Kol's immune system will be getting weaker after the treatments on Wednesday and Thursday, so if Kol gets it from her, or if the flu goes through our family, he could be really quite sick.  I just hope the immune support we have him on will be enough. 

We don't know what our plans will be for the holidays at this point.  The plan at this point is to spend them with the Friggstads.  We may just end up at home.  Home is good, too - especially when you're sick.  It's a good thing that we're flexible.

Friday, December 17, 2010

Another Countdown

We are in a good phase of treatment now.  Kol's counts were higher last week so we have been able to get out a bit more during the last 10 days.  The best part is that we still have another week of relative freedom.  We have rediscovered Kol's love of mandarin oranges;  he has been eating them constantly.   Kol isn't the only one that loves them - in the last 6 weeks, we have gone through roughly 190 lbs of mandarin oranges.  Probably as a result of all of the oranges he's eaten, Kol has started gaining weight.  He is now back to the weight he was at when he was first admitted to the hospital just prior to his surgery.  He is still pretty skinny - size 4 pants fit him around the waist, so the size 8 clothes that fit him in the length are way too loose.  Kol's hair has also started to grow back.  We were told that although the chemo doesn't cause hair loss, since Kol's hair was already gone due to the radiation, it would prevent the hair from growing back.  The girls have jokingly called Kol "peach" because of the fuzz that is coming back.  It's not really long yet, but it's there hiding underneath the chemo caps and toques that he always wears (even when he sleeps).

We still have just under a week until round 4 of chemo starts - on December 22nd.  There is a lightness, freedom, or happiness around the house now, which is good to see.  We are enjoying time together, and have started getting into more of a routine with homeschool and chores.

The next MRI has seemed so far away, so it's been easy to put it out of our minds, and just try to live each day as it comes.  However, since we are now only 5 days away from the scan,  it's becoming much more prominent in our minds.  We can't wait for the day to come, and yet we're dreading it.  The waiting is tough. The MRI itself is such a little thing - Kol just gets to watch a movie while it is taking pictures of his head - but those pictures are going to dictate how we live our lives in the next few months - and potentially for years.  They will give us an idea of what is happening with the tumour - if it is growing, shrinking, staying the same.  From those pictures, we will learn what kinds of decisions we will have to make.  I pray the decisions will be easy.  They will be easy if the tumour is gone, or even shrinking.  I'll even be happy if it's just not growing at this point. 

Please pray that we will get good news following this next MRI.  Pray for health, and healing, and comfort for the rest of us.

On the same day as the MRI, we will be meeting with a psychologist, who has had experience with brain injured children.  We will get information on counseling options, and some help in dealing with some of the inevitable emotional issues we're all facing as a result of the tumour and subsequent treatment.  This psychologist is also a neuro-psychologist, and is planning on doing some neurological assessments on Kol after his chemo is finished.  From that we will hopefully learn what kind of brain damage, if any, has been caused by the surgery, radiation and chemo and how to help Kol overcome any shortcomings he may face.  Please pray that this meeting goes well.

The OES Christmas programs are also on the 21st.  Mari will be involved in these, which means that we will go to Saskatoon in early afternoon for the meeting with the psychologist, and then one of us will come back for Mari's evening performance.  Then we'll go back to Saskatoon with the girls for the start of round 4 of chemo the next day.  It's not the best arrangement, but it will work.  We think it is just as important to make it to Mari's program as is it to see the psychologist with Kol.

It still feels like we are on a roller-coaster ride; I'm sure it will be like this for a long time, but I've had a few emotionally difficult days lately.   I think I said earlier that one wise person told me that grief and understanding come in waves.  I guess I was ready for another wave.  When I was feeling lowest, God sent just what I needed.  A phone call, an offer of help from a friend, an afternoon out with my husband, time to sleep in, and freedom to cry.  More little things; little things that mean a lot.  As traumatic as this experience has been, I am extremely thankful for the lessons that I am learning.  God is good; great things He has done.

Sunday, December 5, 2010

A Typical Treatment Day

Here's an overview of our day on November 24th - day 0 of round 3 of chemotherapy.  The 3 big girls stayed with grandma and grandpa that day, and Kirk spent part of the day working on site for a client, so it was quiet.  When the girls are there too, they'll keep busy  doing crafts, playing on the Wii, watching T.V., or playing board games.  It is actually quite a fun, relaxing day.  We limit "screen time" at home - but they can have as much during these days as they want. 

8:30 Arrive at the Cancer centre (oops - we were late.)
9:00 Blood draw.  This is only done on the first day.
9:05 IV inserted, hydration started.  This will run all day to flush the 2nd chemo drug (cyclophosphamide, or cyclo) through Kol's system faster, in order to minimize intestinal tract damage.  It also causes him to make frequent trips down the hall to the bathroom
9:15 Visit with Dr.  (neurological check, physical exam) (This only happens on Wednesdays, or day 0 of the treatment cycle.)
9:25 Kirk left to do some on-site work for a client.
10:00 Visited with the family of a child with leukemia who we've seen before at the centre.  
10:15 Met a child who had a medulloblastoma, also called an iPNET, 11 years ago, and who is suffering from some side effects of the treatment. 
11:35 The blood chemistry came back fine, so the pre-meds were started.  These run over 15 minutes, and include an anti-emetic and a steroid.
11:55 First chemo drug started.  It goes in over 15 minutes, too. (Kol only gets this drug on the Wednesday, or day 0 of treatment)
12:15 Second chemo drug started.  This one runs for an hour.  It is actually a combination of several drugs and includes an antidote to the chemo drug.  One of its metabolites can cause bleeding in the intestinal tract, so the antidote binds with that metabolite to prevent damage.
12:30 Lunch.
1:15 Cyclo finished, hydration continues.
1:00 Meet with the research associate regarding consent for COG registry.
2:00 Kirk got back.
3:30 Second dose of the antidote started.  This runs for 15 minutes.
4:00 The IV was finally disconnected from the PICC, the PICC was flushed.
4:10 The dressing protecting the PICC line was changed.  This is probably the most traumatic part of the day for Kolbjorn.
4:30 Leave the Cancer Center.
5:00 Arrive at grandma and grandpa's.
7:00 Kol got the 3rd dose of the antidote.  This dose is taken orally.  It is nasty stuff.
7:30 Kol got another dose of the anti-emetic.
8:00 Kol fell asleep on the couch.  He usually doesn't go to bed until around 9:30.

Then we go back the next day for almost the same thing.  The second day is slightly shorter, because the first chemo drug is not given that day, Kol doesn't see the Dr., and we don't need to wait for the blood chemistry results to begin the second chemo drug.

So that is a typical day of treatment,  It's not too exciting - almost boring, but still long and tiring.  We'll be glad when they're done.  Day 0 for the next cycle is December 22nd.  Kol is handling these treatments well, and we pray the second half will go as smoothly. 

Thank-you for praying for us.  Thank God, for what He is doing in our lives.

Wednesday, December 1, 2010

Running back to Saskatoon

It feels like we just got home from Saskatoon, and we're off again, for another set of appointments.  Tomorrow (Wednesday, December 1st) is day 7 of the 28 day cycle, which means that Kol needs to go back to the cancer centre for some more chemo.  This will be a shorter day.  He'll get some blood work done and see the Dr.  Then he'll get another dose of the vincristine he had last Wednesday, and that he got during the summer.  Depending on the results of the blood tests, we'll probably get several more doses of filgrastim to take home.  We should be able to leave the cancer center by noon. 

We also have an appointment with the naturopath for Birgitte.   She has been completely off of her epilepsy medication since the end of September. The strange behavior has stopped.  Her attention span is much longer, she has started singing and playing the piano, she has started reading, and I'm begining to trust her with Annika.  Her eyes are no longer droopy, and her balance is back to normal.  We've been able to keep her well rested, and to minimize the stress.  It is so incredibly wonderful to have our daughter back. We thank God for her every day.  We're thankful also that there doesn't seem to be any permanent damage from the medication; although there are a few lingering behavioral issues, they seem to be lessening as each day goes by.  She hasn't had any more seizures, but we've also been able to keep her well rested, and life has settled into a somewhat predictable routine, which has helped.  However, there is no guarantee that there won't be more stressful situations in the future.  We're not against trying some of the other anti-epileptic drugs, but we'd also like to know if there are other, more natural, options.

 In closing, I'd like to share a quote I came across on a blog I was reading recently.  It's interesting how this seems to tie in with several conversations I've had over the last week.

"Any man can sing in the day. When the cup is full, man draws inspiration from it. When wealth rolls in abundance around him, any man can praise the God who gives a plenteous harvest… The difficulty is for music to swell forth when no wind is stirring. It is easy to sing when we can read the notes by daylight; but he is skillful who sings when there is not a ray of light to read by -- who sings from the heart… Lay me upon the bed of languishing, and how shall I then chant God's high praises, unless He Himself give me the song? No, it is not in man's power to sing when all is adverse, unless an altar-coal shall touch his lip… Then, since our Maker gives 'songs in the night' (Job 35:10), let us wait upon Him for the music." ~Charles Spurgeon

 Lord, help us to sing in the night.