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.

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.

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.

Photos!

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?

BONUS:

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. 

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.

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.

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.

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)

"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:

Click to download a PDF of this poster

"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 emmak@sasktel.net 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.

Freedom

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.