Saturday, February 19, 2011

The future

"Difficult to see. Always in motion is the future." - Yoda
We're through the first two treatment days for this sixth (and hopefully last) chemo cycle. There's one more treatment day coming up on February 23rd, an MRI on March 14th, and a meeting with his oncologist about a week after the MRI. That's all we know about the future of Kol's treatment until we get the MRI results.

If the MRI shows that the tumor is gone, then we simply go to a monitoring cycle - MRI scans every three months for a year or so, then every six months for another year or so, then yearly for a while after that.

If the MRI shows that the tumor is still there... well, that's where the crystal ball gets very, very cloudy. Kol's oncologist hasn't said much about what will happen in that case, except that the first step would be to consult with a surgeon and go from there. We don't know if it will mean more chemo, more surgery, or looking at other alternatives.

I don't deal well with uncertainty. I like to know things ahead of time. I was the kid who read the book before going to see the movie. I'm still the guy who can't help reading plot synopses and spoilers before watching a show or reading a book. This "not knowing" is driving me crazy. It's probably a good exercise in patience for me, but like many other things that are good for me (such as broccoli, sit-ups, or spending time away from a computer) I don't particularly enjoy it. Guess I'll just have to try to live with it.

"Do, or do not. There is no try." - Yoda
Shut up, Yoda. You're not helping.

Tuesday, February 15, 2011

A Year Ago

A year ago today, Annika was 3 days old.

A year ago today, our lives started changing forever.

A year ago today, Birgitte had her first seizure.  We were sitting down to supper, I was holding Annika and had taken one bite. Birgitte had been squirming a bit and had gotten off of her chair, but was starting to climb back on it.  She only got one leg up when she seemed to freeze, slid off the chair onto the floor, and stared at the light above the table while she was convulsing.  I knew as soon as I looked at her eyes what was happening. If you google grand mal seizure, you'll find lots of descriptions of what we saw. 

I called Mom to come stay with the 3 big kids while Kirk and I took Birgitte and baby Annika to the hospital down the street.  The big kids were quite shaken, and I hoped Mom could calm them down; she knew enough about seizures that she could answer their questions and reassure them.  I thought I was calm, handling it well.  Everything went well at the hospital, Birgitte slept for about 30 minutes, the Dr. ordered basic tests to rule out infection or fever, and then we came home.  Just before we left the hospital, I realized that I was wearing 2 different shoes.  I guess I wasn't as calm as I thought. 

Most of the rest of her story is told in other places throughout this blog: her second seizure, EEG, medication problems, and the return of the girl we knew.

Birgitte is back to herself now; no more droopy eyelids, glassy eyes, balance problems, stiff arms, or trembling hands.  No more impulsiveness, (aside what is normal for a 5 year old) no more forced laughter, no more fighting sleep, no more biting, pinching or hitting when she doesn't get her way.  She is singing constantly, playing the piano and is reading again.  She has been seizure free for 7 1/2 months, and off of medication for almost 4 of those months.  We're pretty sure that stress and lack of sleep trigger the seizures, so we're working hard to keep her well rested.  It's paying off so far.  For this, and for the wonderful, sparkling child that she is, we are incredibly thankful.

Sunday, February 13, 2011

Crisis Mode. What next?

When Kol was in the PICU, one of his visitors said we were in "crisis mode",  referring to our reaction to the frenzy of activity, the information overload, the emotional roller coaster, the choices we had to make.  We go into crisis mode to help deal with all those overwhelming things that need to be done.  It's a necessary thing, a way of blocking out the less important things, focusing on the immediate concerns.  In a way, it's a kind of tunnel vision, where we get so focused on the goal that we don't see the smaller, less urgent matters.  

We're just days away from starting Kol's last round of maintenance chemotherapy.  We've been looking ahead to this time for what feels like a lifetime.  We've been hoping and praying that Kol would just make it through, that the chemo would be effective against the tumour and wouldn't cause too many side effects.  Soon, I can actually look ahead and maybe start planning for life after cancer treatments.  Soon, Kol won't need any more of those nasty drugs.  Soon we won't have to worry, at least for a while, about low blood counts, G-CSF injections, or even daily PICC line flushes.  We might be able to relax, to try to get on with our lives.  Kol will finally be able to be a normal kid, he can swim again, and even have a bath without wrapping his arm with saran wrap.  He can run and wrestle without worrying about pulling out the PICC line.

When I started thinking about being able to relax, I realized that I haven't really let my guard down since the night we took Kol to the E.R.  I thought I had.  I thought we'd had time to relax, to settle into the "new normal", and in many ways we have.  But I think that the new normal was actually still just a new type of crisis mode.  Crisis mode lite.  Going through the motions, trying to meet everyone's basic needs, yet not really knowing for sure how to do that.  Maybe it's kind of like an urgent survival mode.  I don't know if I remember how to be still.  I don't know if I want to. 

When I was in Norway, there was a music school that shared a campus with the folkehøgskole I attended. It was maybe the Norwegian equivalent of the School of the Performing Arts. They performed the musical Chess that year, and I loved the music.  I got to see several performances - if a performance wasn't sold out, those of us attending the folkehøgskole got to go in, after the first 10 minutes or so, at a reduced rate.  In the musical a Russian and an American are battling for the world chess title during the Cold War.  Lately, I've been thinking about some of the lyrics from one the songs from it ("Where I Want To Be"):
 . . . and yet I feel I haven't won at all; running for my life and never looking back in case there's someone right behind to shoot me down and say he always knew I'd fall.
When the crazy wheel slows down
Where will I be? Back where I started.
This is how I feel sometimes.  Like we're still running, not looking back or to the side, knowing always that such an aggressive cancer can come back at any time, destroying any progress we've made.  And if we slow down, let up our vigilance - does that mean we'll be back where we started, fighting the cancer again?  Facing more surgeries, more treatment?  It may be irrational, but I feel that if I give up on the crisis mode - if I stop being vigilant, if I start letting go, being less careful about what we eat, about what we do, if we stop giving Kol the supplements he's taking, then everything will fall apart.  I'll lose.  Maybe I'm not trusting God.  But then, is it right to do things my own way and then blame God when they don't work out?

We'll soon need to get back to reality, remove the tunnel vision, get on with life.  Right now, that is a terrifying thought, while at the same time I yearn for it.  For normalcy.  I just want things back the way they were.  But that's not possible.  Our lives will never be the same.  I don't know if I can ever be "normal" again.  We've learned too much.  Changed too much.

One year for Christmas, our kids got towels with pictures of themselves.  In his, Kol is laughing while licking an ice cream cone and ice cream is running over his fingers. I can remember the day that picture was taken at the ice cream store at Emma lake. Kol was telling jokes from a joke book he had been reading at Grandma and Grandpa's cabin to another family that was sitting with us at the giant picnic table.  It was so much fun.  I wish I could take the family out for ice cream occasionally now without feeling that I'm actually poisoning my kids with all of the chemicals, sugars, additives that they'd be eating.  I don't know how to make memories like that without junk food.  I wish we were a normal family.  But we're not.  Kol will have to watch his diet very carefully for at least a couple more years, in order for his immune system to recover from the radiation and chemo damage, and to prevent secondary cancers from forming.  (I know some of you will wonder why I keep talking about food. Cancer is, according to the books I've been reading, a symptom of an inefficient immune system.  We all have thousands of cancer cells in our bodies, but our immune systems attack them and flush them away before they are allowed to grow.  An inefficient immune system can't.  The best way to strengthen and keep the immune system strong is by giving it the right kind of fuel - the fuel/food God created for us.)

We (or maybe just I) have been trying to take things just one day at a time for so long, that it's hard to look too far into the future.  Maybe we shouldn't yet. We just need to continue to take life one day at a time, and enjoy what we've been given, learn the lessons that can be learned, and share whatever insights we may have, in the hope that our experience may benefit someone else.

Kolbjorn has come through treatment extremely well so far.  We met someone at the cancer enter who has been undergoing the same treatment protocol as Kol has.  He lost a lot of weight, and was constantly ill and tired between treatments.  Kol's weight has fluctuated, but it has never dropped below the weight he was at when he underwent surgery, and aside from the actual treatment days, he has not been sick.  If it weren't for his bald head, no one would guess what he'd been going through.  For that we are grateful beyond words.

The next phase of this journey is still precarious.  We don't know what the upcoming MRI will show us.  We don't know if we'll be back where we started.  We don't know what comes after crisis mode lite.  We have yet to move into that phase.  We do know that we have to move on, and I'm sure that we will, slowly.  We know that we have lots of people supporting us, for which we are thankful.  We also know that God is always with us.  We can still feel Him guiding us, watching over us, giving us peace.  He is capable, and Kolbjorn is still in His hands.

I couldn't think of how to finish this post, and then, out of nowhere, one of the songs we sang in Concert Choir at LCBI came to mind. This is my prayer for all of us tonight.
The Lord bless you and keep you
The Lord lift his countenance upon you
And give you peace, and give you peace
The Lord make his grace to shine upon you
And be gracious unto you, And be gracious
The Lord be gracious, be gracious unto you
Amen (7x)

Thursday, February 10, 2011

"Heading For A Cure" coming soon!

In the last few months we've mentioned the support group sponsored by the Brain Tumour Foundation of Canada - we've really appreciated getting together with others who are dealing with brain tumours, either themselves or in a family member or close friend. We've received some excellent resources from the Foundation, including patient handbooks and a children's story book (all available for free to anyone who asks - the handbooks are absolutely essential!), and they also put on educational events for people to learn more about brain tumours. Now we'd like to give a little back to the Foundation by bringing this to your attention:

"Heading For A Cure" will be a musical evening featuring a variety of performers at the Bassment in Saskatoon. It happens at 8PM on Friday March 4th, and tickets are $15 for adults and $10 for students, with proceeds going to the Brain Tumour Foundation of Canada. There will also be a silent auction. If you're interested, please phone 306-249-2055 or e-mail for information or tickets. We're hoping to able to attend, and we'd love to see some familiar faces there too!

By the way, this is a "warm-up" to the Saskatoon Spring Sprint fundraiser that will be happening in Saskatoon on Sunday June 5th - you'll likely see more stuff about that here in the months to come, as we're hoping to participate in that as well.

I just realized that in just less than one week, Kolbjorn will begin his 6th (and hopefully last) cycle of chemo. It's hard to believe we've come so far already. Thanks so incredibly much to all of you for being with us on this journey, we've really appreciated your love and support.

Sunday, February 6, 2011


Kol had bloodwork done on Wednesday and his white count was up over 11 (it had been at 0.6 just a week earlier) thanks to the daily injections of G-CSF.  That means he is free to be out in public again.  His hemoglobin was low, though, which is probably why he has been more tired over the last couple of weeks. 

Since Kolbjorn's counts were good, we were able to go ahead with plans for Mari's birthday party.  She had 6 friends sleep over.  It was noisy having all of those pre-teen girls around, but it was fun.  I know they created lots of good memories.  Aside from the noise level, it was honestly hard to tell there were so many preteen girls in the house.  I really like Mari's friends, and it's a great way to get to know them all better.  Julianna is also planning a sleep over for her birthday, so we'll be doing it over again next weekend with 12 and 13 year olds.  Julianna has cool friends, too. 

Tomorrow (Sunday, so I guess it's actually today) we'll be having family over for a party for all three of our February girls.  Mari was 11 last Wednesday, Julianna will be 13 on Tuesday, and Annika will be one next Saturday.  Life is good.