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.