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.

            Thursday, May 26, 2011

            Kol's story . . .

            . . . is up on the Brain Tumour Foundation website.  Check it out!  Here's part of it.
            In April 2010 Kol was suffering from regular headaches and nausea. Initially Kirk and Kristen thought it could have been food sensitivities, so they began changing diet and looking for patterns. Concerned about the headaches, Kristen took Kol to the doctor but because Kol also had ear and throat infections, that was determined to be the issue. Then on May 25, 2010 the headaches became much worse and just wouldn’t go away. . .
            There are more stories here and here.


            There was an interview - live, at 8:30 on CJWW, and then they recorded interviews on Magic 98.3FM, at 9:00, and another one  at 9:15AM on 92.9FM.  We don't know when the others will be aired.  

            Wednesday, May 25, 2011

            Radio Interview!

            I know this is really short notice, but if you are one of those who are still checking this blog regularly, or who happen to check at the right time, you might be able to hear Kirk, Kolbjorn, and Karen Linsley (one of the Saskatoon Spring Sprint organizers) on Magic 98.3 FM and it's sister stations tomorrow (Thursday) morning.  We don't have a lot of details yet, except that the interview is at 8:30 AM.  It may be broadcast live, or taped, and we don't even know how long it will be. 

            We should be getting more details later in the day, so I will post them as we know more.

            Thursday, May 19, 2011

            A Whole New World

            A year ago, I knew nothing about brain tumours.  I knew very little about cancer, and even less about what sick children experience.  It's as if there is a completely separate world, running in parallel with the world most people know - sort of like an undercurrent - or even an underworld of sorts.  I don't mean "underworld" in the sense of hell, or hades, but a world hidden, underneath the fabric of "regular" society.  It is a world of medications, doctors, side-effects, treatments, appointments, worry, hope, scans, tests, fear, pain, needles, loss, triumph, loneliness, strangers who become friends, heartache, friends who become strangers, research, confusion, drugs, joy.  If we even know this secret underworld exists, we ignore it - put it out of our minds.  We think that that world is for others - not us.  While that is true to a certain extent, we are proof that anyone could become part of that world without notice. 

            Even though we discovered the "underworld" through difficult and tragic circumstances, I'm thankful to be part of that world.  It's like so many worthwhile lessons and goals in life that are difficult and painful to learn or achieve.  While I wouldn't wish a brain tumour on anyone, and if I could go back and change the past, I would in a heartbeat make it so that Kolbjorn never had a tumour in the first place, I am very thankful for discovering the "underworlds" of cancer and sick kids.

            Jasmine and Aladdin discover a whole new world on their magic carpet.  Sometimes, I feel like them - discovering so many new things, tumbling through the endless sky, holding our breath, hoping there's something below to catch us if we fall. 
            My "magic carpet" ride.
            A whole new world
            A dazzling place I never knew
            But when I'm way up here
            It's crystal clear
            That now I'm in a whole new world with you
            Now I'm in a whole new world with you

            Unbelievable sights
            Indescribable feeling
            Soaring, tumbling, freewheeling
            Through an endless diamond sky

            A whole new world
            Don't you dare close your eyes
            A hundred thousand things to see
            Hold your breath - it gets better
            I'm like a shooting star
            I've come so far
            I can't go back to where I used to be

            Jasmine's new world was dazzling, happy.  I wish - and hope - that ours will be, too.
            A year ago, when Kirk and the girls were preparing for the Relay for Life, I remember  being impressed with how so many people put so much of their heart and soul into planning and working to raise money for the event.  I see now why they do it.  Events like the Brain Tumour Foundation of Canada's Spring Sprint and the Relay For Life help to provide hope to those hurting with hope, information, and support.   Participating in these events is a way to overcome the helplessness we felt when we, or someone we love were fighting for their life, and feel like we are paying it forward.

            While I have concerns about the efficacy of the research being done into cancer treatments, and am cynical enough to believe that there are more economic and financial reasons to NOT find a cure for cancer (since research is so profitable - and so many organizations, and so many people's livelihoods depend on providing cancer treatments) I still believe that those suffering require support and education. That is what I am working for.  We have been especially thankful for the information and support we have received from the Brain Tumour Foundation.  That is why Kolbjorn is a spokesperson for the Spring Sprint.

            Please consider supporting, or even joining Kol's Krew in the Saskatoon Spring Sprint.  See KolsKrew.ca for more details.  Thank-you!

            Friday, May 13, 2011

            SHOW ME THE MONEY!!!!!

            It's fundraising time! We're involved in a couple fundraising events coming up soon:
            We would love to have your support for any or all of these events - click on the links for the Spring Sprint or Relay for Life to donate directly, or give us a call or email if you'd like to pledge "offline". Thanks!

            Thursday, May 5, 2011

            Arizona Photos

            From the Musical Instrument Museum, in the experience room.  There were dozens of instruments from around the world that we could try out.   We had a blast, but it was a noisy place!  I apologize for the picture quality.  Some of the blurriness is intentional (like Kol's hand in the first shot, and the gong mallet in Julianna's hand) and some is a result of not being able to use my flash in the museum, and squirmy kids.

             There were literally thousands of instruments on display around the museum, you could spend days checking them out.

             Our picnic lunch on a pontoon boat on Canyon Lake.  It was incredible being surrounded by rock walls and seeing the cliffs rising so high all around the lake.

            On Silly Mountain.

             At the zoo.  We have pictures in the clam shell, and under the giant tortoise shell from each time we've been to the zoo.  It's cool seeing how the kids have grown through the years.

             The goats.  Mari, Birgitte, and especially Annika had a blast brushing them. 
             Julianna was content just to sit and watch them.  Closely.  Kol refused to leave the goat pen until he had brushed every single animal there.  

             The carousel at the zoo.  Annika got to ride too, but she didn't like it when the animals went up and down, so we just watched the others.  

             Swimming.  Of course.