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.

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!

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.

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.

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. :-)

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.

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.

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. 

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)

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.