Wednesday, December 21, 2011

Prayers, thanks, and updates

On Tuesday December 27 at 7:00pm, there will be a service of prayers for healing for Kolbjorn at Bethlehem Lutheran church in Outlook, similar to what we did back in June 2010. Please consider this your invitation to join us.

We want to say "Thank you" to everyone who has called us, emailed us, stopped to talk with us at church or the post office or the grocery store, or simply kept us in your prayers. We really appreciate your support.

We've spent this past week recovering from the shock of the MRI results, researching different treatments, and of course simply being caught up in the business of the holiday season - the Sunday School Christmas program plus various other recitals and concerts has kept us on the go for the past few days.

It looks like we won't get any new treatment started until after Christmas, so we're looking forward to being able to simply enjoy spending time with together with our families and friends. Merry Christmas to you, and may 2012 be a year of healing and renewal for us all.

Thursday, December 15, 2011

"There's been some growth."

This is not a sentence I ever wanted to hear from Kol's oncologist. However, it's exactly what we heard when he called Wednesday to ask us to come in to see him on Thursday. If it's good news, the oncologist will just tell us on the phone. When it's bad, we get asked to come in person.

"There's been some growth."

It's not at all what we expected to hear. Kolbjorn has gained some much needed weight, has grown taller (which was not a given, since a possible side effect on the radiation was pituitary damage and hormone regulation), his hair is back (darker, but just as curly as before), he has lots of energy, and we learned on Tuesday that he is not developing cataracts yet (which we were told is a given as a result of the radiation). So far, there are only subtle signs of cognitive issues. We are constantly watching Kol for signs of relapse, and we haven't noticed any signs or symptoms of tumour growth - no co-ordination problems, headaches, unusual vomiting (although Kol was sensitive to a new supplement he recently started getting) or slurred speech. Kol has come through all of the treatment with flying colours.

"There's been some growth."

We feel blind-sided. Our hearts are broken, tears are close to the surface. The original tumour has started growing again. It is noticeably larger on the MRI images we saw. The possible, "tiny spot" that the radiologist "might" have seen in September has also grown. We don't want to do this again. I feel weak, overwhelmed. Scared. Lost.

"There's been some growth."

There is no standard protocol at this point - the only "proven" treatment is the chemo that Kol has already been through, and the oncologist says that the tumour that is left is resistant to that treatment. There is no effective treatment that the Cancer Agency can offer Kolbjorn at all. Nothing proven, all experimental, nothing that has been proven to be even as effective as the treatment Kol has already had.

The oncologist did give us options for a different chemo treatment, either a cocktail of two chemo drugs, or being part of a study that would possibly add a third drug to the mix - in either case, 12 treatment cycles, each cycle lasting a month. One of the drugs is administered intravenously, and would require Kol to be admitted to hospital for a minimum of five days each cycle during treatment. There is no data as to how effective it would be for Kol's condition. In addition to the typical chemo side effects (weakness, low appetite, nausea, vomiting, low blood counts, hair loss) one of these drugs causes severe diarrhea, and another one would put Kol at risk for bleeding. If he were on that drug, he would not be eligible for surgery of any kind until a period of time after discontinuing it.

Surgery may be an option - the oncologist hasn't consulted Kol's neurosurgeon yet - however the tumour is apparently near a brain structure that contains a bundle of nerves that control movement, which could make it tricky. The doctor didn't really seem to be too hopeful about the possibility.

"There's been some growth."

This leaves us with few choices, and yet lots of choices. Because there is no proven effective cure, we can not be considered negligent for choosing alternative treatments, or even for choosing to do nothing at all. I've done tons of reading and research in the last 18 + months, and there are some encouraging alternative treatments that wouldn't impact Kol's quality of life so drastically.

We are taking some time to gather more information and to pray. We do know, however that we don't have too long to make our decision, as this tumour is growing quickly, and the more growth, the harder it will be to treat.

"There's been some growth."

Throughout the last 18 months, we as a family have grown in many ways. And, with this new tumour growth, I expect more growth. It's just so painful. I am so proud of our kids - of the way they pulled together to support each other when we told them about what the doctor said.

We know that God is the great healer. He has Kol in his hands, and I know that He is capable of healing our precious son. Please pray for direction for us; for guidance in making the decisions we have to make, and for peace for us - especially for Kolbjorn and the girls.

It's been a long time since I've thought about the old hymn - the one that kept popping into my head when Kol was first diagnosed, but I've been hearing it again throughout the last 24 hours.

To God be the glory, great things he hath done!
So loved he the world that he gave us his Son,
who yielded his life an atonement for sin,
and opened the lifegate that all may go in.

Praise the Lord, praise the Lord, let the earth hear his voice!
Praise the Lord, praise the Lord, let the people rejoice!
O come to the Father thru Jesus the Son,
and give him the glory, great things he hath done!

O perfect redemption, the purchase of blood,
to every believer the promise of God;
the vilest offender who truly believes,
that moment from Jesus a pardon receives.
(refrain)

Great things he hath taught us, great things he hath done,
and great our rejoicing thru Jesus the Son;
but purer, and higher, and greater will be
our wonder, our transport, when Jesus we see.
(refrain)
Above all, please also pray fervently for Kol's complete recovery. The God of the Bible, God of Abraham and Isaac, who created the world, who has conquered evil and who sent Jesus to be our saviour, is infinitely capable of healing a little boy. We give God the glory for Kol's health and survival to this point. We give Him the glory for healing our son, and for the work He continues to do in our lives. Pray that God uses our pain and struggle to reach others. It's painful for us, but I think it would be even more painful if I knew that all of our pain had no purpose - that nothing good would come from our hurt. I want to believe - maybe even need to believe - that our pain now is small in comparison to an eternity without God.

Wednesday, December 14, 2011

MRI results coming

We have an appointment with Kol's oncologist tomorrow morning (Thursday) to discuss the results of his recent MRI scan. Please pray.

Tuesday, November 29, 2011

On the beach

The water rushes towards me. As it washes over my feet and my legs, the force of the moving water threatens to knock me over. As it retreats back to the ocean, I feel the sand being pulled from underneath my feet. I don't know if the tide is rising or falling. Still, I stand firm, and await the next wave. This is our family's journey. This is Kolbjorn's journey.

Wednesday, November 23, 2011

MRI and travels

We just got the date for Kol's next MRI - Friday, December 2nd, at 3:00pm. We'd appreciate your prayers, if for nothing else than our nerves. The last MRI indicated that there may possibly be new growth, but Kol has been feeling fine, with no unusual headaches or any other symptoms, so we're not too worried... but yes, we are still a bit nervous.

Also, we realized that we hadn't mentioned our upcoming travels - in less than 48 hours, we should be in the air on our way to California! We're going to be there for five days with my parents - our itinerary isn't set in stone yet, but we're planning on a couple days at Disneyland, a day or two at Legoland, and hopefully a day at Sea World in San Diego. The kids are also looking forward to seeing the ocean for the first time, although I don't expect we'll do any swimming (except maybe at the heated pool at the hotel).

We're all getting pretty excited - it should be a great family time for us, and any excuse to get away from snow and ice is just fine by me!

Saturday, November 12, 2011

Regina fundraiser for Camp Circle O'Friends

On Wednesday night, we were honoured to be a part of a charity auction put on by the Canadian Progress Club - Regina Centre to benefit Camp Circle O'Friends. Kol was asked to give a short speech, similar to what he did for the National Inside Ride fundraiser for CCoF earlier this fall, and he did a great job:


And we all got to dress up real fancy too:
We clean up pretty good, eh?
Thank-you to Camp Circle O'Friends and to the Progress Club for making us a part of this event!

Thursday, November 3, 2011

Home again

56 hours and 1200 kilometers later, we have arrived back home from Calgary. Kol's dental work went quite well - all his mercury amalgam fillings have been safely removed and replaced with composite. He also received intravenous vitamin C as part of the mercury removal protocol, which meant that he had to drink a lot of water afterwards to help flush out his system, which meant that our drive home from Calgary was frequently interrupted by "the call of nature".

The rest of our stay in Calgary was enjoyable. The hotel was good - it won't be winning three or four stars in any travel guides, but our room was clean, the staff was friendly, there was free WiFi, and the beds were comfortable. IKEA was good for the most part, except for the disappointing discovery that they no longer carried Daim candy - after spending the necessary few hours walking through the store, I was really looking forward to getting a big bag of Daim. The Apple store was amazing - I got to try out some different Mac systems and iPhones, and we got a recommendation for a good drop-resistant iPad case - but the only thing I brought home from there was a list of what I want to buy if I win the lottery stumble across a backpack full of unmarked $20 bills get a few good programming gigs.

As much as we enjoyed this trip, the best part was still arriving at home, seeing our "missing" girls, and having our family together once again. Be it ever so humble...

Monday, October 31, 2011

Hello from Calgary!

Kol is in Calgary (along with Kristen, Annika, and me - the other girls are at home with their grandma in Outlook). Tuesday morning he goes to the Evans Centre for Dental Health for assessment, and assuming all goes according to plan, on Wednesday he'll have all his mercury amalgam fillings removed and replaced with a more bio-compatible (to Kol) material. This is all part of our ongoing work to keep Kol's immune system in "fighting shape".

Oh, and since we're in Calgary we'll probably visit IKEA. I don't think we're bringing any sofas or bookshelves home with us, but the back seat of the van is empty, just in case.

And I've just discovered that there is an Apple store in the mall approximately 750 meters from the Evans Centre. I suppose this is one of those opportunities to practice self-control. Or maybe one of those opportunities to bring home a SHINY NEW MACBOOK PRO AND A PAIR OF 27 INCH THUNDERBOLT LCD MONITORS AND A FANCY GLASS AND ALUMINUM DESK FROM IKEA TO PUT IT ON AND A JUMBO BAG OF DAIM CANDY AND FISH BALLS AND OTHER SWEDISH DELICACIES BWAHAHAAHAHAHAHAHAAA....

...*ahem*... as I was saying, an opportunity to practice self-control. And to practice my grumpy "daddy can't get the new toys he wants" face. My family knows it well.

Wednesday, October 26, 2011

October is Brain Tumour Awareness month in Canada

October is Brain Tumour Awareness Month

From BrainTumour.ca: Brain tumours are more common than most people think. Every day in Canada, 27 Canadians are diagnosed with a brain tumour and it is estimated that 55,000 are living with the disease. For individuals and families living with a brain tumour, Brain Tumour Awareness Month is an opportunity to create awareness, raise support and share information about this devastating disease.


AND . . .
October 30 - November 5 is International Brain Tumour Awareness week.

In spite of the growing number of brain tumour diagnoses, many people with tumours are still misdiagnosed. Kol had several symptoms in the weeks preceding his diagnosis, but we didn't recognize them. We have no way of knowing whether an earlier diagnosis would have helped in Kol's case - everything fell into place so well once the lesion was found on the CT - but it certainly wouldn't have hurt. I hope that no-one reading this will ever have to deal with brain tumours, but, realistically, no-one knows what the future will bring. For future reference, here are some of the signs and symptoms of a brain tumour (from BrainTumour.ca)

Signs and symptoms can include:
  • Visual disturbance such as double or blurred vision
  • Weakness or paralysis
  • Personality changes
  • Morning nausea and vomiting
  • Dizziness or unsteadiness
  • Frequent headaches
  • Hearing impairment
  • Seizures

If you or someone you care about experiences any of these symptoms, please consult your doctor.


In case you missed it, check out Tuesday's post about Kolbjorn's birthday party - with pictures.

Tuesday, October 25, 2011

The Party!

Kolbjorn's birthday party finally happened on Sunday October 16. It was a very good day, and we all had fun. Kol was thrilled. We had between 50 - 60 guests, enjoying "Kol friendly" sugar-free cake and checking out the new clubhouse and the books. Close to 30 of those were kids. We had some friends who were able to come because they were already here for LCBI Homecoming, some who drove out just for the party, and lots of people from the church and the community were able to come too.

Kol even got a copy of this book, with a personal birthday greeting from the author. Quite exciting. He didn't know he knew an actual author. Because so many people wanted to read it, we decided to read it together as a family, once we've finished The Hobbit.

The kids played games in the backyard, read books, and had balloon fights. The electrical work on the clubhouse wasn't done yet, so the clubhouse was kind of cold, even with a space heater out there. The kids didn't really care, though. Unfortunately, we forgot to take pictures - which is very unusual for us. I was too busy worrying about getting the cake served, I guess. I don't know what Kirk's excuse is (I'm sure I had a perfectly legitimate excuse, although I am currently at a loss to remember what it was - Kirk). Obert took pictures, though, so here are some from him.

Friends exploring the clubhouse
Sitting comfortably on the loft by the skylight
Lots of room on the loft for others too!
The "grown-ups" stand around and talk
Trying to get the sparklers lit!
The "grown-ups" stand or sit around and talk
Kol trying to get a point across
Back in the warmth of the house, opening presents
The electrician who did the original wiring inside the clubhouse came today to finish it. He put in light fixtures, and baseboard heaters. It's now bright and cozy when all the switches are turned on. Now that it's not so cold out there, I'd be surprised if we see Kol much during the next few days. He'll be off fighting monsters, laughing at orange cats, having duels, sailing the seas and traversing the galaxy. I wish I could join him!

Friday, October 14, 2011

The clubhouse is here!

Kol's clubhouse was delivered this morning!

The truck arrives out front
Kol checks it out
Waiting now at the back alley
Overhead lines caused a few delays... 
...but eventually it made it down the alley... 
...and began to back into our yard! 


Lifting some lines in our yard... 
...as it slides into place. 
Almost there! 
FINALLY! YES! 
A happy and excited family! 
Stacie from Children's Wish and Kol
There's still some work to do - the electrical needs finishing and hookup (probably next week), we'll need to build some stairs for the front door, and maybe install some skirting around the bottom - but Kol is already making himself at home, sitting and reading in a beanbag chair. We'll post some interior pictures once we have it looking a little more presentable.

If you're in Outlook this Sunday (October 16), please stop by anytime between 2:00 and 5:00pm for Kol's birthday and clubhouse celebration!

Our sincere thanks to:

  • The Children's Wish Foundation of Saskatchewan for making this possible, and especially to Stacie for organizing and co-ordinating everything!
  • Scott H and the staff and students of E.D. Feehan high school for building the clubhouse
  • Brad's Towing for bringing the clubhouse out to Outlook
  • Indigo Books for helping stock the clubhouse's bookshelves

Sunday, October 9, 2011

Shopping spree!

Indigo Books in Saskatoon is supplying books for the library portion of Kolbjorn's personal backyard Clubhouse Library. They had gone through Kol's 16 page long Amazon wish list and gathered all of the books that they had in stock, which amounted to about 4 full boxes. Since there was still room in the book budget, Kol got to go into the store in person and choose more books. He had a BLAST! (emphasis added at Kol's request) He loved that we said yes to almost any book he asked for. He even chose a few books just for his sisters. We spent close to 2 hours browsing through the store. The staff was great.

Now we have 7 boxes of books sitting in our front entry, waiting to be placed in the clubhouse when it comes. We've told Kol that he has to wait to read the books until they are actually on the shelves in the clubhouse. He's chomping at the bit to start reading - but we don't really want him to have finished reading everything before the clubhouse actually arrives. Believe it or not, that is a very real possibility, considering how many times the clubhouse has been delayed, and how fast Kol reads.

Quote from Kol: "I couldn't read any of the books in most of the boxes anyway, because the top box is too hard to move. It's too full of books."

We already have several boxes of books that will be moved into the clubhouse when it arrives - books from the shelves in Kol's room, and maybe some of the books the girls have been collecting, too. Kirk is busy scheming about cataloging software that we can use to keep track of what we have. Here's a list of what has been purchased for the library up to now.

We're pretty impressed with the variety of books Kol has gotten so far, and with the books he chose on his original wish list. We'll be working on filling in the gaps as time goes by. Kirk and I have hesitated posting any links to the wish list, but I finally decided to just go ahead and do it now. That way, those of you who don't know Kol that well can get an idea of what he's like by seeing what kind of books he's interested in. And I have to admit I'm pretty proud of the collection of books we managed to put together. Kol created the list almost completely by himself; he suggested an author, a series or a topic, I would find books that fit his criteria and Kol would pick out the books he wanted from those lists - often reading previews or reviews of those books before making a decision. We borrowed dozens of library books, giving Kol a chance to figure out which authors, series, and genres he liked. I admit that I did add a few books (maybe 20 - 30?) that I thought he'd enjoy, (thinking skills, classics, Canadian books) and that I wanted him to be exposed to. He has books about science, chess, knitting, cooking, math, Lego, Star Wars, Lego Star Wars, mythology, history and music. He has Christian books, mysteries, sci-fi, fantasy, comics, reference books, children's books, humour, graphic novels, historical fiction, classic literature, how-to books, devotionals, and even a textbook or two. The English teacher in me is very impressed. Have I mentioned that I love this kid? I do.





Thursday, October 6, 2011

Plan C

You are all invited to a party in our backyard on October 16th, between 2:00 and 5:00 pm. Unless we need to make a Plan D. Please disregard any previous announcements or invitations you may have seen.

Kolbjorn wants to have a combination Birthday party and Clubhouse Library housewarming party this year, so we have waited to schedule the party for when the clubhouse is here. It was originally scheduled to arrive on September 29th or 30th, so we planned to have Kol's party on October 2nd. The clubhouse was delayed, and would be delivered about a week later, we were told, so we decided to have the party on the 10th of October. Then, on Tuesday (October 4th), we learned that it would be delayed yet another week at least. We won't know for certain when it'll be coming until October 11th, but we're taking a chance that it'll be here in time for the party on October 16th.

We'll keep you posted - if there are any more delays, we'll update the blog.

Sunday, October 2, 2011

Sad anniversary

Six years ago today, my dad died. The day before he died, we celebrated Kolbjorn's 3rd birthday in Saskatoon at the Fun Factory, and then had ice cream cake at Jerry's. After the party, we got a phone call, asking us to come to the home where Dad was - he wasn't doing well. Birgitte and I spent that Saturday night at his bedside with Mom. Dad died after church the next day.

I haven't really thought much about Dad in the last few months; I guess I've gotten used to not having him around. Tonight, however, I'm finding that I really miss him. I wish he had been here, memory intact, throughout Kol's treatment. I remember that he was good at thinking outside the box, or maybe it was just that his box was so much different than mine. I loved just sitting and talking to him, getting him to tell me stories about "the olden days" when I was smaller, and then having more serious discussions as I got older. He was my sounding board when I had tough decisions to make. He would patiently sit and listen as I talked through my reasons for being indecisive, occasionally agreeing with me, occasionally pointing out a different point of view, yet quietly letting me know that it was my decision to make, and reassuring me that he'd be there to back me up, no matter what I decided. Almost always by the end of those conversations, I would know what I wanted to do, and I felt confident in my decision. Looking back, some (many?) of those early decisions were pretty inconsequential in the grand scheme of things - typical teenage angst - yet Dad seemed to take them as seriously as I did.

Tonight, I desperately miss that sounding board. I haven't had it for a long time - Alzheimer's stole that ability from Dad years before he died - but tonight, I wish that he had been here. I wish he had been here with his quiet stoicism, his patient listening ear, his insightful point of view, and his non-judgmental back-up when we had so many decisions to make regarding Kol's treatment. There have been times throughout the last 16 months when I've felt as if I were floundering around, uncertain - even lost. Today, when the memories of Dad came flooding back, I realized that I've been missing my sounding board. I've been longing for a good listener, somewhat removed from the situation, with life experience, to help me sort out all of the conflicting, confusing information and help me come to the best possible solution. My Dad. I long for the confidence I had after one of those discussions with him.

Dad can't be my sounding board any more. I know I can try to imagine what he'd say, and I will. I think I can even guess pretty accurately what he would say. But right now, I just wish he were here to say it himself.

Tuesday, September 27, 2011

Happy birthday Kolbjorn!

Today Kolbjorn celebrates his 9th birthday, and I am reminded of all the dark moments over the past 16 months where doubt of his survival quietly screamed from the corners of my mind. We are so incredibly blessed and thankful to be able to celebrate with him today, and we dare to hope to celebrate many more birthdays in the years to come.

We're also anxiously awaiting the delivery of Kol's library clubhouse - a 10' x 10' structure that will go into our back yard, with lots of bookshelf space, and a good-sized selection of books to start stocking those shelves. It should be here by the end of this week, and we hope to have a combination community birthday and clubhouse-warming party shortly - we'll have details up here very soon.

And from a year ago, here's a song that a random stranger on Reddit wrote for Kol's birthday - I still love listening to this.
Kol, the force is with you
Kol, to the Jedi code be true
King Kol, inside your lego castle
If you need subjects I'll be your vassal 
It's your birthday Kol, you're one year older
Every day may you get stronger and bolder
It's your birthday Kol, we're here together
Through easy sailing and stormy weather 
Kol, give your lightsaber a swing
Dodge the blasters and hop into your x-wing
[Guitar solo]
[Chorus]
The force will always be with you...

Thursday, September 22, 2011

The inside ride

We just realized that we haven't written yet about The Inside Ride. It is a national fundraiser, with events held across the country, benefiting a different cancer charity in each city. The link probably explains it better than I can. It takes place tomorrow - Friday September 23, at Evan Hardy Collegiate in Saskatoon.

Proceeds from the Saskatoon Inside Ride will go to support Camp Circle of Friends - the camp our kids attended in June. It was a good experience for them. They all got to meet other kids who either have or had cancer themselves, or whose immediate family members (parents or siblings) have cancer. The kids all talked about camp for weeks afterwards, and they still are telling us stories. It was cool that there were other kids who were part of the world of sick children - the world that we didn't even know existed before Kol's surgery.

We are honoured to have been asked to be the Tribute Family for this year's ride. We will be the representatives of the camp, and will have an opportunity to speak about how camp has affected us. Kol is thrilled to be giving another speech. Birgitte had originally said she'd also like to talk, but now she is getting nervous.

Wednesday, September 14, 2011

Keep calm and carry on

We got Kol's MRI results on Monday. In the doctor's words, there was "essentially" no difference between this scan and the last one in terms of the tumor, which is relatively good news. However, the radiologist says that there may - MAY - be a new tiny nodule in the surgical site. The oncologist says that it's nothing to worry about (yet), but that it will be watched closely at his next scheduled scan three months from now.
Good advice regardless of the situation.
We've had a couple days to process this now. I don't think I handled the news particularly well to begin with - it definitely wasn't what we were hoping to hear - but now I feel like I am able to keep calm and carry on. Kol handled the news with typical aplomb - he's quite convinced that it's just the MRI equivalent of a speck of dust on the camera lens. Kristen had some tears, but is quite optimistic, and the girls seemed to take the news in stride. I think we're going to be OK.

Thank you all for your prayers and your encouragement.

Friday, September 9, 2011

Playing catch-up

I feel I need to apologize for not posting much this summer. It's not just that we've been busy, although that is probably part of why there haven't been many updates; I just haven't really known what to say. Things have, for the most part, been going well this summer. I find it harder to write about the good things than the bad. I think of all of the kids we know who are still in treatment, or who are no longer actively being treated because all of the most effective treatments have failed. I think of Violet, Max, Hunter and Nick, who had tumours like Kol's - but whose fights against cancer have ended, and I feel guilty that our child, our family is doing well. It feels like bragging to talk about the good stuff. In my head, I know that it's not bragging - we're just telling it like it is - but at the same time, we don't want to make others feel bad because things are going well for us. I also know that I love reading the stories of other kids with tumours like Kol's who are doing well. It's reassuring to know that there is proof that this cancer can be overcome.

I think I've also been reticent to post about the good stuff because I'm afraid that if everyone knows that we are doing well, that Kol is doing well, they will move on, stop praying for us, stop reading this blog, thinking we don't need them any more. I know I'm like that, and I think most of us are. We all want to help out in times of need, and when we don't think we're needed any more, we move on. There always seems to be a huge outpouring of support when tragedy strikes - lots of organizations sent people to Indonesia after the tsunami there, or to New Orleans after Katrina, but we back off when the crisis is over. I know it is normal for support to come in waves, but at the same time, I still crave the support. It is wonderful knowing that we aren't in the fight alone. I still love hearing people tell us they've been praying for us or Kol, and still are. I love it when I see that we still have lots of people checking the blog regularly. I love getting e-mails and reading all of the comments on the blog. We still need you. We still covet your prayers, your friendship, your support.

As I said, Kolbjorn has been doing really well; he's gained weight and grown taller, his hair is back, he's been running around, swimming, teasing his sisters, reading books to Birgitte and Annika, and it feels good. It warms my heart. I feel like my heart is going to swell so much that my chest would explode. I've loved watching Kol be a normal kid this summer (or maybe a better way of saying it is that I've loved seeing Kol being himself again.) I've loved watching the kids spend time together and play with friends and cousins. It was even good to see Kol hiding in the cabin; while his sisters were tubing and going for rides on the boat, he was most often inside or sitting on the deck reading. He's kind of like his dad that way.

We spent about 10 days at Christopher Lake and Kinasao this summer. Our family attended family camp over the August long weekend. It was good to relax and spend time with friends. Pastor Sid Haugen led the bible study, and I really appreciated the discussions we had. I think Kirk did, too. The kids had a blast. Even Annika, who is normally quite uncertain around people she doesn't know well, started outgrowing her shyness and even spent most mornings with the babysitters. After family camp, Kolbjorn and Birgitte attended day camp. They also enjoyed that - there were lots of people they already knew there - including several cousins, friends from church, and Rachel - Kol's best friend from camp.

We got home in time to help out with VBS at the church. Julianna and I were crew leaders, Mari, Kol and Birgitte participated, and Kirk was Chef Pierre Mon Frere - a character in an ongoing skit throughout the week. Annika spent most of the mornings with Kirk, in between show times. After VBS, Julianna and Mari took off to Kinasao again for skills camp. They had a blast, as usual.

This summer has also been a time for emotional healing; for processing emotions that were suppressed, or too hard to face before. I have cried much more this summer than I did last year when Kol was going through all of the treatments. Last year, we felt we were being carried through it all. Like in the poem the poem "Footsteps" - God was carrying us then. This year, there have been lots of quiet moments when I look at the kids watching movies, playing a game together, giggling, reading books to each other, or even fighting with each other and I suddenly realize how easily that moment never may have happened. How close we were to never being able to experience the joy or emotion of that particular moment. How close we were to losing our son. It hits literally me like a ton of bricks, takes my breath away. The tears come and I can't stop them even if I wanted to. It's been a tough, emotional summer, but it's been good, too. I expect that, for the rest of Kol's life, we will always be aware of the possibility of a relapse. The fear and concern will always be at the back of our minds, and every headache will be more than a headache. I didn't expect, however, to still be feeling the emotional aftermath of Kol's surgery and treatment so intensely over a year later.

The big plans I had for getting lots of things accomplished this summer (like finishing the renovations on our house so Kol wouldn't have to share a bedroom any more, and yard work that was neglected for the last 2 years) took a back seat again, this time to the emotional healing that we all had to do. We've tried to spend more time together just as a family. I know that I have been craving more time with Kirk and the kids, and the kids have all been asking both for more one-on-one time with us and for more family time together. They've also been needing more snuggles and hugs. I suspect we've all needed reassurance that we're all important, and we've needed to re-connect. We've needed to catch up with each other. As a result of spending more time together, we've been able to have some much needed, heart-to-heart conversations. On Wednesday, we talked to one of the social workers we know from the cancer center, who told us that it was obvious that we talk with our kids. As a result, our children appear have adjusted well to Kol's illness. It was wonderful to hear that from someone who has seen lots of families, and sick kids and who knows what they are talking about.

Edited to add: Kirk just put up another post yesterday, too - don't miss it. If you can't see it, click on "Kolbjorn's Journey" at the top of the page, and scroll down past this post to see it. Or click here.

Thursday, September 8, 2011

A busy day

Wednesday was a long day, but overall it went well. We arrived at RUH around 7:20am without incident - despite my fears, there was no feeling of hostility or dread upon our arrival at the parking lot. We got through admitting quickly, and Kol went into the MRI around 8:00am. By 10:00am, we were at the cancer center for bloodwork and a routine checkup, and by noon we were on our way back to my parents' house where the rest of our mob was staying. One more run back to RUH at 3:00pm for an audiogram (as certain chemotherapy drugs can cause hearing loss), and then we were on the road back home. We stopped in Vanscoy to have supper at Robin and Quinten's restaurant, had a great visit with them, then got home and got the kids to bed. Eventually.

In all my feelings of anxiety Tuesday night, I forgot just how much we appreciated the staff at the Cancer Center. It was like meeting old friends again when we arrived. The staff there all commented on how much hair Kol has, how he's put on weight, and how much taller he is. Strangely enough, it almost felt like a homecoming. It was definitely not what I was expecting to feel, and it was very welcome.

Kol was great. He was thrilled to see the staff at the Cancer Center again, and even managed to handle two "pokes" - one for the IV for the MRI contrast, and a second one for the bloodwork at the Cancer Center. Back in the early days of his treatments last year, before he got his PICC line, the "pokes" were very traumatic for him (even with a topical anesthetic cream applied beforehand), so we were especially proud of how well he took the needles today. It was also great to see Kol chatting and joking with the staff - he was so lively and animated, and he looked like he was among old friends.

The bloodwork and audiogram results were all good, so all we're waiting for now (as usual) are the MRI results. Kol's oncologist said we should probably hear from him by Friday with those results. Time to be patient.

Wednesday, September 7, 2011

Uneasiness

It's the night before Kol's MRI, and Kristen and I don't much feel like sleeping yet. I'm tired, yet full of nervous energy. Right now I'm dreading the thought of driving into the hospital parking lot. It's been two and a half months since the last time we were there, and I've suddenly noticed that it feels like hostile territory. This is a new feeling for me - there have been other times where I've felt uneasy about returning to the hospital, but there have always been feelings of familiarity to counteract it, often even feelings of almost homecoming. Now, as I think about tomorrow morning, all I want to do is run away, avoid it.

The last two and a half months have been good for us, and it's been easy to forget just what Kol (and all of us) have been through in the last sixteen months. When Kol was in treatment, I remember a feeling of shock and unfamiliarity when I saw a picture of Kol before he got sick, with a full head of hair. Now, I've noticed similar feelings when I see a picture of him without hair. It's like I've put this experience out of my mind, like a bad dream or something. Our life has felt much more "normal" lately - no doctor appointments, no big cancer fundraisers, no daily PICC line maintenance, no regular bloodwork, no quarantine times at home waiting for Kol's immune system to recover.

Maybe that's what is affecting me tonight. The reality of Kol's scan tomorrow is a blatant reminder of what we have been through. It can't be ignored, no matter how much I want to. And then we have to play the waiting game again - waiting to hear what the MRI shows, waiting to hear if our lives will get turned upside-down again, waiting to hear if our son will have to endure more hardship. My only hope and prayer is that the scan shows nothing of concern - no growth of whatever remains of the tumour, or finding that it has completely disappeared.

Your thoughts and prayers are welcome - for Kol's tests to come back with good news, and for our family to find peace of mind, peace of heart, and patience while waiting for the results. Thank you.

Saturday, August 27, 2011

MRI time again

Kolbjorn's next MRI will be on September 7th at 8:00 am.

I'm actually looking forward to the MRI this time; it'll be good to know what is going on in Kol's head. Kol has been having headaches again recently, which obviously concern us some. I still long for the days when a head ache was just a headache. These are acute but they never last more than about 10 minutes (Kol is reading over my shoulder and told me I should change that to about 10 seconds). We don't even have enough time to get him Tylenol. Kol will sometimes have some water, and by the time he's done drinking it, he says his head is better. He has a high pain tolerance though, so I wonder if it really is gone, or if it's just not so acutely painful.

This MRI will be roughly 6 months since Kol's last treatment. One mom of another child who has the same type of tumour as Kol's pointed out that she had seen a pattern of relapse. Often, she said, new growth appeared on scans at 6 or 9 months post treatment. The kids who make it past the 9 month milestone seem to do better long term. We are headed into a crucial time. We know that every child, every tumour is different, and that Kolbjorn is in God's hands. Thank-you to everyone for continuing to pray for our family and for healing for our amazing son.

Saturday, July 16, 2011

Neuropsychological screening results

On Monday we got the preliminary results of Kol's neuropsych screening. We will be getting a much more complete, written report in the next couple of weeks, broken down into specific areas, with percentiles and specific recommendations. Overall, especially considering what Kol's brain has been through, the results were very promising. However, we got a glimpse of what might have been. I find that I am again grieving the loss of "what would have been" had Kol not had the tumour.

I don't remember what the actual terminology was - but, basically, Kol has an uneven profile. An uneven profile is not uncommon among those with brain injuries. His weaknesses are what one would expect to see in someone who has suffered injury to the frontal areas of the brain. From what I understand, a typical profile would show relatively consistent results throughout the different sub-tests. There would still be some obvious pattern of strengths and weaknesses, but if one score was in the "average" or "at-risk" range, then generally the other scores would be in the same range. Kol scored in the superior range on at least one of the tests - the one that is sometimes used as a predictor of IQ (if for some reason a full IQ test is not administered) and at least one of his scores was in the at-risk range. Some were average. The best news is that none of the scores were low enough to show impaired functioning - which is amazing. The sad part is that without the tumour, surgery, radiation, and chemo there is a very good chance that Kol would have scored in the superior, or high average range in everything.

It takes about a year for the brain to heal from trauma, and there will be gains throughout the next few months as his brain heals and creates new circuits. We just don't know how big the gains will be, or in what areas. Kol will go back for a more thorough assessment sometime next spring, at least a year after his last chemo treatment.

We went into Kol's surgery knowing that it could result in brain damage. I knew then that it didn't matter, that we could deal with anything, as long as he survived. I have to admit that I am somewhat disappointed by the results of this screening. I had hoped (maybe irrationally?) that the tests would show that he didn't have any damage. I have always suspected that Kol was extra smart, and it's disheartening to have proof of that fact when it's gone. However, that said, it's wonderful that I can worry about how this will affect his future. It means he has one.

Thursday, July 7, 2011

MRI results

Finally got the MRI results today, and they are promising. The doctor couldn't say for sure, but the nodule may be smaller, perhaps as small as 5mm by 5mm (the last MRI showed it around 10mm by 5mm). Again, there is no way to tell whether it is tumor or scar tissue, but the doctor mentioned that it didn't appear to take up any of the contrast - so if it is tumor, it's at least not active. So, the worst we can take away from these results is "no change", which isn't bad news at all.

I don't think we realized just how much we've been holding our breath over the past couple weeks while waiting for these results. The relief is now beginning to wash over us, and it feels good. Thank you all for your prayers and encouragement.

In other news, we just got a new appointment to get Kol's neuropsych screening results next Monday (July 11), so we're looking forward to that - and there's much less suspense and anxiety connected with those results!

Friday, July 1, 2011

Lack of happenings

It's been over 10 days since Kol's MRI, and we still haven't heard anything from the cancer center. This is the longest we've had to wait for MRI results. On the one hand, it's making us a bit nervous - the mind starts to wander into "what could be wrong?" territory. On the other hand, there is the "work to rule" labour situation going on at the cancer center right now, and combined with people beginning summer vacations, etc. it may simply be taking longer to get paperwork processed, etc. Hopefully we'll hear something early next week. Once again, we have an opportunity to work on patience - this seems to be a recurring theme in our lives. :-) Thanks again for your prayers.

Monday, June 20, 2011

Happenings

Here are a few quick notes on what's been happening lately:

  • Camp Circle of Friends: the four oldest kids spent Thursday through Sunday at Camp Circle of Friends on Lake Diefenbaker, and had an absolute blast. It was strange being at home with just the baby - I don't know how many times we said "I miss the kids" to each other! We're glad to have them home now.
  • Neuropsychological screening: we were supposed to meet with Kol's psychologist last week to get the results of his neuropsychological screening, but as luck would have it, the rotating health care worker strike hit the Kinsmen Children's Center the day of our scheduled meeting. We'll have to wait until the labour situation is resolved before we can get another appointment. It's frustrating and a bit disappointing, but it's not a life and death situation - if we have to wait a few more weeks to get these results, it probably won't make any significant difference. I just don't like waiting and not knowing.
  • MRI: Kol has another MRI this Monday (June 20th), along with a follow-up visit with his oncologist. The last few MRI scans have shown no growth in the tumour (or whatever it is that's still left in there), so we're hopeful that this scan will continue to show no growth. In a perfect world, it would show that the tumour has disappeared completely, but I don't dare to hope for that.
  • Birthday girl: June 20th also marks Birgitte's 6th birthday! It almost feels like it sneaked up on us while we've been busy with everything else over the past few weeks, but we're going to do some celebrating on Monday after we're done with Kol's MRI - probably a low key affair on Monday (just the seven of us), with some bigger celebration(s) in the next couple weeks with friends and family. Happy birthday to our big little girl!
  • Children's Wish Foundation: Kol has finally decided on his "wish" from the Children's Wish Foundation - a library clubhouse filled with books! The structure will be built by the shop class at E.D. Feehan high school in Saskatoon, and Kol is now working on a list of books to populate the bookshelves. We've met with the shop teacher who's designing the clubhouse and will be leading the project, and there are some very neat features in store. The only downside is that there isn't enough time left in the school year to finish it before summer, so it will have to wait until this fall. There's a possibility that it might be ready by Kol's birthday in late September - that would make an incredible birthday present for him!
  • On the road: lots of traveling over the past few weeks - many trips to Saskatoon as well as a trip to Christopher Lake and Camp Kinasao. Pity we can't earn frequent flyer miles on the minivan.
  • Brain Tumour Education Seminar: Kristen and I attended a seminar on June 11th put on by the Brain Tumour Foundation, and we're very glad we went. One of the speakers was a pediatric neurologist from the College of Medicine in Saskatoon who specializes in brain tumours - needless to say, we paid very close attention to his presentation! We also discovered that he regularly assesses kids like Kol, so we're going to hopefully get a referral to his clinic.
  • Media blitz: We've really appreciated all the positive feedback from Kol's speeches at the Relay for Life and the Spring Sprint, and I'd especially like to thank our local Outlook newspaper for the interview and the great front-page writeup on the Relay for Life - we've had a lot of comments on that as well! Kol's interview with CTV didn't make it to air (they cut most of the story about the Spring Sprint due to coverage of a stabbing at a night club - "if it bleeds, it leads"), but it was still a fun experience for us.
We appreciate your prayers - for the results of the MRI, for the results of the neuropsychological screening, for our patience. Thank you for your love and support.

Thursday, June 9, 2011

Speeches

Here are the speeches Kol gave this weekend at the Relay for Life in Outlook and at the Spring Sprint in Saskatoon. We'd also like to say a big THANK YOU to everyone who sponsored us in these events and all those who were part of them!

Lake Diefenbaker Relay for Life, June 3-4 2011:


I ended up in a very poor spot to record video - all I could see was the top of his head over the crowd, so I replaced the video with some of the pictures we shot that night. The audio isn't very good either, as there was a lot of wind that evening, but you can make out most of it. Here's the text of the speech, so you can follow along:

Dad says it's good to start off a speech with a joke, and I figured that since I used to be bald, I could tell a bald joke:

A bald man went to the doctor and asked for something to cure his baldness. The doctor said "try rubbing your head with onions and garlic". The man asked "does that really work?" The doctor said "no, but no-one will come close enough to you to notice that you are bald."

Blame my dad for that. Sorry.

I'm proud to have been asked to give the survivors' speech tonight, and to be able to walk in the survivors' lap.

Mom says it's good for people to share their stories with others, because they can give us hope and encouragement. My story started just over a year ago. I had really, really bad headaches. When mom and dad took me to the hospital, scans showed a large tumour in my brain. Last year, during the Relay, I was recovering in the hospital from my brain surgery. I was still attached to tubes and I.V.s and monitors. After lots of needles, radiation, and chemo treatments over the past year, I am thankful to be here now as a cancer survivor.

When I found out I had cancer, I was sad because I thought I might not make it through. Then I got mad because I didn't want to die. I wanted to live a long and happy life. When my treatments were done, I was glad because there was a chance my tumour would be gone and I could just be a kid again.

There are some things that I've learned from having cancer.
  • I don't like needles.
  • Bald is beautiful. At least, that's what my grandpa tells me.
  • Toques are very nice when you don't have any hair.
  • When you have an MRI scan, you get to watch movies so it's not so BORING.
  • There are lots of other people who have cancer too, even lots of other kids, and it's good to get to hear their stories.
  • It's good to celebrate things, like having your last radiation treatment, or your last chemo treatment, or a birthday that you weren't sure you would have.
  • I really don't like needles!
  • The parking lot at University Hospital is expensive. At least, that's what mom and dad say.
  • The things you eat can help you get well.
  • It can be hard to change what you eat.
  • I miss Kraft Dinner.
  • I don't like most of the food from the hospital cafeteria.
  • I REALLY, REALLY don't like needles!
  • Sisters can be annoying, but they are really good to have around when you're sick.
  • It's really good to have family and friends to help you.
  • A good attitude will help you kick cancer's butt.
Our stories aren't finished yet. The doctors told us that only one in three kids who have the kind of cancer I had would survive. I still don't know how the rest of my story will end, but I know that I have a lot of people who are with me. Thank you for walking along side of all of us survivors here tonight, and for being a part of our stories.

Saskatoon Spring Sprint, June 5 2011:



The speech Kol gave Sunday morning was partly based on the speech he gave Friday night. He did an awesome job on this one as well, and this time I had a better view of him. Here's the text of this speech:

Dad says it's good to start off a speech with a joke, and I figured that since I used to be bald, I could tell a bald joke.

A bald man went to the doctor and asked for something to cure his baldness. The doctor said "try rubbing your head with onions and garlic". The man asked "does that really work?" The doctor said "no, but no-one will come close enough to you to notice that you are bald."

Blame my dad for that. Sorry.

I'm proud to be a part of the Spring Sprint today, and to be able to share my story with you. Mom says it's good for people to share their stories because we can all learn from each other, and the stories can give us hope and encouragement.

My story started just over a year ago. I had really, really bad headaches. Mom and dad took me to the hospital, and on the day before the Spring Sprint last year, the doctors found a large tumour in my brain. I had surgery the very next morning to remove it, the same time as many of you were “sprinting”. I was attached to tubes and I.V.s and monitors for what felt like a long time after that. A week later, we found out the tumour was cancerous.

When I found out I had a brain tumour, I was sad because I thought I might not make it through. Then I got mad because I didn't want to die. I wanted to live a long and happy life. When my radiation and chemo treatments were done, I was glad because there was a chance my tumour would be gone and I could just be a kid again.

I want to share some things that I've learned from having a brain tumour.
  • I don't like needles.
  • Bald is beautiful. At least, that's what my grandpa tells me.
  • Toques are very nice when you don't have any hair.
  • When you have an MRI scan, you get to watch movies so it's not so BORING.
  • There are lots of other people who have brain tumours too, and it's good to get to hear their stories. Mom and dad say the brain tumour support group here has been really good for that.
  • It's good to celebrate things, like having your last radiation treatment, or your last chemo treatment, or a birthday that you weren't sure you would have.
  • I really don't like needles!
  • The parking lot at the hospital and the cancer clinic is expensive. At least, that's what mom and dad say.
  • The things you eat can help you get well.
  • It can be hard to change what you eat.
  • I miss Kraft Dinner.
  • I don't like most of the food from the hospital cafeteria.
  • Sisters can be annoying, but they are really good to have around when you're sick.
  • I really, really don't like needles!!
  • It's really good to have family and friends to help you.
My story isn't finished yet. The doctors told my mom and dad that only one in three kids who have the kind of tumour I had would survive. I still don't know how the rest of my story will end, but I know that I have a lot of people who are supporting me.

THANK YOU for being a part of the Spring Sprint, for being a part of my story, and for being a part of the stories of everyone here who has been affected by a brain tumour.

I still feel like we haven't quite recovered from this weekend, but it was an incredible experience. We were so honoured to be a part of these events, and we hope to be part of them again next year. Hopefully they won't end up on the same weekend again. :-)

Tuesday, June 7, 2011

Anniversary

The last few days have been emotional ones for us. We've been remembering the events of last spring - a year ago.  Today was especially significant.

One year ago this morning, we got pathology results from Kol's tumour.  We learned that the tumour was not a low grade tumour as we had thought, but rather a rare, fast-growing, aggressive tumour.  That was more of a shock than learning that Kol had a brain tumour and that he needed immediate surgery.  I can't even describe how I felt.  I keep coming up with cliches, like "the rug was pulled out from beneath me", "the bottom fell out", "turned my life upside down", "the day everything changed", "like I was punched in the gut", "gut-wrenching", "sucker-punched", or "topsy-turvy."  It was the most traumatic day of my life thus far.  I have to admit that I didn't really think that the tumour might be malignant. The odds were certainly on our side, and since Kol had been doing so well up to that point,  I just assumed the rest would be easy, too.

Maybe it was such a shock because, when we first learned about the tumour, we were just so relieved that we finally knew why Kol was sick and that something could be done about it.  Maybe it was because we knew that Kol absolutely needed the surgery to save his life.  Maybe, I took it so hard because we had just gotten Kol back - he had survived the surgery, and would recover - and then it felt like he was taken from us.  The surgeon had said that the majority of supratentorial tumours (the part of the brain where Kolbjorn's tumour was) were low grade - meaning that they would be considered benign if found elsewhere in the body.  Low grade tumours wouldn't require further treatment. Now we had no idea what we would be facing, what Kol's future would be, what our family's future would be. I had thought that the tumour would just be a little "blip" in our lives; Kol had had most of the tumour removed, he would recover enough to be able to go home again in a few more days.  There didn't appear to be much brain damage at that point - Kol was finally able to speak again, and although he was weak, was regaining his motor control.  We had our son back, he was healthy, he had a cool story to tell and a neat scar to show off.  And then we got the pathology report.  We were no longer at the end of the journey, but just barely starting.

We have come a long way since then.  We've learned so much, grown so much.  It's been good, terrifying, difficult.  Kol has defied the odds and we are thankful.  We have Kol back and he is healthier than ever.  We thank God for this blessing.

Cancer is a terrible disease, and we know it could come back quickly, with little warning.  There is a little girl, just a bit younger than Kol, who was diagnosed with an sPNET tumour about a year before Kol.  In November, when we first heard about this child, she was doing well - her hair was back, her scans were promising, and she was able to attend school.  Then, this spring, several months after she had finished her treatments, an MRI found two new tumours in her brain.  There are no guarantees in this world.

Sunday, June 5, 2011

Relay For Life

We are at home now, recuperating from a long, cold night at the track.  In spite of the cold, we had a good night.  We all ended up coming home for a couple of hours in the middle of the night - I brought the 3 littlest kids home around 11:00, and the others got home at 2:30. We woke up around 6:30 and got back in time to walk a final lap and then pack up our blankets, chairs and snacks.

Kol did an awesome job on his speech - he's such a performer.  He would pause, smile, and look out at the audience whenever he thought they might laugh.  It was so good to see.  I saw a few tears in the audience during his speech, as well as laughs.  I think that means it was a success.  The video we took of the speech picked up most of the audio - there was some wind interference, but we can still hear Kol.  The camera was pretty far away from Kol, though, and there are lots of heads in the way, but we can still see him - mostly.  Maybe Kirk will put it up on YouTube next week sometime. 

Carla Chabot (who did our family pictures earlier this year) was the official photographer for the event, and has put together a photo montage on Facebook.  Here it is.  There are a few shots of all of us - you can even see Annika in a couple of the pictures. 

In many ways, it was an emotional evening for me.  There were several luminaries with Kol's name on them which was overwhelming.  I found that as I walked, memories from a year ago kept coming to mind; memories of Kol in the hospital, of conversations with Doctors, of hearing that Kol had a tumour, and that the tumour was cancerous.  I also kept thinking about last year's relay, about how different things were this year as compared to last year.  When Kirk and the girls signed up on the team, I had imagined hanging out at the track with them and taking in the program. So much changed after that.  I remember the fear, shock and unbelief I felt when Kirk called to say he was bringing Birgitte to the ER.  I was in Kol's room at the hospital - he still had the EVD in and was still in the noisy observation unit.

I'm headed to bed soon. I need to be up around 6:30 tomorrow, however, my mind is still racing, so I'm not ready for sleep yet.  We need to be on site for the Spring Sprint by about 9:00.  It sounds like CTV will be covering part of the event, so you might want to watch the news tomorrow. 

Good night, sleep tight.

Wednesday, June 1, 2011

Read all about it!

This has been a media blitz week!


On Sunday afternoon, we had a visit with John McPhail.  He wrote a story about us for The Outlook - our local newspaper.  It will be published in the June 2 issue, just in time for the Relay For Life.  We had a fun visit; Kol got to talk about his journey and about his dreams for the future, while Kirk and I shared about our struggles and the lessons we've learned.  We're happy with the story, and hope that you will enjoy it, too.  The paper will be in mailboxes tomorrow.  If you don't get The Outlook, you can pick up a copy when you're in town on Friday to hear Kol's speech, or, if you can't make it to pick up your own copy, just send us an e-mail, and we can arrange to get you a copy.  

Also, just in case you haven't noticed, we have been adding lots of new posts this last week.   Scroll down to be sure to see them all.  (You may have to click on "Kolbjorn's Journey" at the top of the page first to get the most recent posts to show up on one page.)

Thank-you again for your support and prayers. 

Tuesday, May 31, 2011

Another opportunity to hear Kol speak

Not only will Kolbjorn be giving a speech at the Saskatoon Spring Sprint, he will also be delivering the survivor speech at the Lake Diefenbaker Relay for Life here in Outlook, and then Kol will be leading the survivor's lap.  The survivor's lap is the first lap around the track, walked only by those who have cancer, or who have had cancer and survived.   I am so thankful that Kol is able to walk this lap this year.  We have come a long way in the last year.  God has been so good to us. 

We were very honoured and humbled when Kolbjorn was asked to give the speech.  Kolbjorn is thrilled - but I'm not sure he really understands what it entails.  I don't even know what it entails.  We have been working on writing his speeches today, and will hopefully have them finished so he can practice them several times in the next few days. 

Kirk and 4 of our kids are on the Equinox Cast of Characters team this year for the relay.  Kirk, Julianna and Mari were on the team last year as well, however Kirk and Julianna were not able to participate.  This year, they have a chance to be involved again.  Equinox Theatre is our local theatre company.  Kirk has been involved with several productions in the last few years, and the kids all had roles in the fall production last year.  The Cast of Characters will be walking in costume for the first laps.  For all of you Elvis fans - there are unconfirmed reports that he will be at the relay. There will also be a couple of fairy tale characters, a mouse, a cat, and more. 

If you are able, we'd love to see you at the relay - come have fun, visit with us, hear Kol's speech and show your support.  Mari said it's a fun event, and we're looking forward to it.  If you would like to sponsor Kol, the girls, or Kirk in this event, see the Equinox team page, or contact us through phone or e-mail.  Our contact info is on the Contact Us page - there is a link on the upper left side of this page, near the title of the most recent post.

Lake Diefenbaker Relay for Life
June 3, 2011
Outlook High School track
Program (with survivor speech) 7:00pm survivor lap to follow
Luminary ceremony at dusk (around 10:00, I think)

Monday, May 30, 2011

Brain Tumour Primer

May is Brain Tumour Awareness Month in the U.S.  As a result, there are a lot of new stats about brain tumours in the headlines.  While most of this is stuff that we've read before, most people aren't as obsessed with reading about brain tumours as I am.  Therefore, the teacher in me decided that it was time to share some of this information now - just as we are preparing for the Saskatoon Spring Sprint and raising money to support those with brain tumours.

{Shameless plug} Kolbjorn is a spokesperson for this event and will be doing a speech before the actual sprint.  We have really appreciated the handbook published by the Brain Tumour Foundation, and have also benefited from the information and support we have received as part of being involved in the support group, and believe that this is a very worthy cause to be involved with.  Please consider joining, or sponsoring Kol's Krew.  Even if you don't sponsor Kol or join the team, we'd love to see you at the event - come and have some fun and hear Kol's speech.  There will be a band, and a barbeque, and more.  It's at Meewasin Park, north on Spadina near Pinehouse Dr.  {end shameless plug}

Before I start the primer, I want to review some of the details of Kol's tumour as we understand them.  Kolbjorn's tumour is a primary, malignant tumour.  It is a sPNET tumour, which stands for "supratentorial primitive neuroectodermal tumour".  Supratentorial refers to the place in the brain where the tumour is found, and "primitive neuroectodermal" refers to the type of cell that the tumour originated from.  An sPNET can be further differentiated, so Kol's tumour is a neuroblastoma sub-type of sPNET.  All sPNET tumours are tumours of the central nervous system (CNS.)  It was a sphere, roughly 4 cm in diameter, growing in the fluid space in the brain - the left lateral ventricle.  This is where spinal fluid is made.  The surgeon said that there was also some calcification - most likely tumour - in the thalamus, just below the ventricle, which could not be removed through surgery.  During surgery, 90 - 95% of the tumour in the fluid space was removed.  Now there is only an oval shaped piece of something, (we don't know what, maybe scar tissue; living, slow-growing tumour; dead tissue - something else?) which is 1 cm long and about 0.1 cm wide at the widest.

If you want to know more about the brain structures and where exactly in the brain Kol's tumour actually was, there is a good tutorial from St. Jude Children's Research Hospital in Tennessee.


The Brain Tumour Foundation of Canada website has a lot of basic information about brain tumours.  From Brain Tumour 101:
  • A brain tumour is a mass of abnormal cells within or around the structure of the brain.
  • A brain tumour can be primary or secondary,  benign or malignant.  
  • Primary tumours originate from cells within the brain, and remain in the brain and spinal fluid. 
  • Malignant tumours are :
  • classified as WHO Grade 3 or 4
  • Fast-growing
  • Poorly defined borders
  • Can invade surrounding tissue
    I haven't been able to find many Canadian stats about brain tumours, but we've heard "through the grapevine" (so I don't have solid back-up for this) that there are roughly 52 malignant brain tumours diagnosed in Saskatoon and area each year - or about 1 a week.   This would include primary tumours, (starting in the brain) secondary tumours (as a side effect of earlier cancer treatment, caused by chemo or radiation) and metastatic tumours (as a result of a different kind of cancer, such as breast, or melanoma spreading to the brain).  Approximately half of all brain tumours are benign, (also according to "the grapevine",)  so that would mean that there are somewhere around 104 new brain tumours diagnosed each year in Saskatoon.  Regina would, presumably, have have about the same.  

    Here are some of the U.S. statistics from the National Brain Tumor Society.  I've bolded the stats that I find most compelling.

    Facts about Brain Tumors

    • There are over 600,000 people in the US living with a primary brain tumor and over 28,000 of these cases are among children under the age of 20.
    • Metastatic brain tumors (cancer that spreads from other parts of the body to the brain) occur at some point in 20 to 40% of persons with cancer and are the most common type of brain tumor.
    • Over 7% of all reported primary brain tumors in the United States are among children under the age of 20.
    • Each year approximately 210,000 people in the United States will be diagnosed with a primary or metastatic brain tumor. That's over 575 people a day:
      • An estimated 62,930 of these cases are primary malignant and non-malignant tumors.
      • The remaining cases are brain metastases (cancer that spreads from other parts of the body to the brain).
    • Among children under age 20, brain tumors are:
      • the most common form of solid tumor 
      • the second leading cause of cancer-related deaths, following leukemia
      • the second leading cause of cancer-related deaths among females
        • Among adults, brain tumors are:
          • the second leading cause of cancer-related deaths among males up to age 39
          • the fifth leading cause of cancer-related deaths among women ages 20-39
          • There are over 120 different types of brain tumors, making effective treatment very complicated.
          • Because brain tumors are located at the control center for thought, emotion and movement, their effects on an individual's physical and cognitive abilities can be devastating.
          • At present, brain tumors are treated by surgery, radiation therapy, and chemotherapy, used either individually or in combination.
          • No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual's age, and overall health status.
          • An estimated 35% of adults living with a primary malignant brain or CNS tumor will live five years or longer.
          • Brain tumors in children are different from those in adults and are often treated differently. Although over 72% percent of children with brain tumors will survive, they are often left with long-term side effects.
          • Symptoms of a brain tumor can include headaches (recent, new, or more severe than usual), seizures (in a person who does not have a history of seizures), cognitive or personality changes, eye weakness, nausea or vomiting, speech disturbances, or memory loss. While these are the most common symptoms of a brain tumor, they can also indicate other medical problems.


          Sunday, May 29, 2011

          Neuropsychological Assessment

          Tomorrow, Monday, May 30, Kol will be going to the Kinsmen Children's Centre for a neuropsych evaluation.  He will spend all morning, and probably most of the afternoon doing tests - what kind of tests, I'm not sure - to evaluate whether or not he has any brain damage, and to find what areas he might struggle in.   With all of the treatments that Kol has been through, it's more likely a question of "What kind of damage has been caused?" than "Is there any damage?"  We are, however, obviously hoping and praying that these tests will show that Kol's brain function is perfectly normal.  The testing day will be long, but if Kol can't handle the testing, or if he gets too tired, it will be continued another time. 

          From what we have read, most children with brain tumours don't lose the abilities they had before treatment, but their ability to develop new skills and to think more abstractly is diminished.  There are certainly ways to mitigate the damage, but it helps greatly to be able to focus on weaker areas.  It may take him longer than it would otherwise have done to learn key concepts. 

          I've been trying to avoid thinking about the possibility that Kol may have suffered from brain damage, yet the reality is that there is little chance of avoiding damage.  My second greatest fear since the tumour was discovered has been that Kol would have serious brain damage.  (Obviously, my greatest fear was that Kol would die.)  I've never been good at sports, or music - so academics, research, learning, etc. have always been important to me.  It makes me sad to see others 'waste' their intellectual abilities, and I really admire 'smart' people.  If I were to be brutally honest, I'd even have to admit that I look down on those that don't appear to be very intelligent (a fact that I'm not really proud to admit).  I have been proud of Kol's intellectual abilities - proud that he is my son.  As a result, Kol's brain tumor is hitting me in the most sensitive spot.  It's making me swallow my pride. The possibility of brain damage, memory problems, or diminished function makes me anxious about Kol's future and the struggles he would face as a result.

          Kol has come through every hurdle that he has faced much better than we ever could have hoped, so there is reason to believe that he will come through this just as well.  We know also that God is in control and that He is very capable of miracles.  We know there is nothing special about us - we don't deserve miracles any more that the hundreds or thousands of other kids suffering with cancer - but that doesn't stop us from hoping and praying for the miracle of a perfectly normal, unaffected brain. 

          Please pray
          • that Kol enjoys the tests and really tries his best
          • that Kol won't get too tired during the testing
          • that we get an accurate picture of what Kol's strengths and weakness are
          • that the tester will be at her very best
          • that those interpreting the tests will not make any mistakes
          • for Kirk's and my peace of mind, and that we will be able to accept the results graciously, no matter what the outcome
          Thank-you again for your support and continued prayers.  We cherish them.