The roller-coaster ride of an 9-year-old boy's brain cancer: the parents' perspective
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:
Thank-you to Camp Circle O'Friends and to the Progress Club for making us a part of this event!
And we all got to dress up real fancy too:
| We clean up pretty good, eh? |
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 Iwin 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...
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
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.
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
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.
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!
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.
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| Friends exploring the clubhouse |
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| Sitting comfortably on the loft by the skylight |
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| Lots of room on the loft for others too! |
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| The "grown-ups" stand around and talk |
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| Trying to get the sparklers lit! |
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| The "grown-ups" stand or sit around and talk |
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| Kol trying to get a point across |
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| Back in the warmth of the house, opening presents |
Friday, October 14, 2011
The clubhouse is here!
Kol's clubhouse was delivered this morning!
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 truck arrives out front |
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| Kol checks it out |
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| 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! |
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| Stacie from Children's Wish and Kol |
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.
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.
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.
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