Thursday, February 23, 2012

Climbing the hill.

While we were on our way home from Oklahoma, we came across a package of Kleenexes someone had so thoughtfully packed for us for our trip. On the Kleenexes was a verse: "When you help someone up a hill, you get that much closer to the top yourself."

It seems like over the last few weeks, we've been climbing a steep, rocky hill, but we've had many, many people - friends, family, and even people we've never met helping us up the hill. We are overwhelmed, humbled, and grateful for the outpouring of support, thoughtfulness, and kindness that that has been shown to us since - well, since Kol was initially diagnosed with cancer - but especially since January 7th. I keep saying that, but it's honestly how we feel. It amazes me, really, what people have done for us. We are constantly being carried, supported. Every day it seems, we hear of new efforts, or get an e-mail or letter that encourages us in some way (I'll be sharing more about some of them soon - I promise).  We really don't deserve the kindness that has been shown to us any more than anyone else does. We're just dealing with the challenges we've been given, in the way that seems right to us. Just like everyone else faces their own challenges. Yet at the same time, I'm awed, proud, and incredibly impressed to see the way so many people have pulled together for a common purpose and goal. I thank God for our friends and family. I'm proud of our town and the people here, and I'm incredibly thankful that we get to call Outlook home.

God is good. I see Him working in the people of Outlook, in the way that this town is being strengthened as the people come together for a common goal and as their pride in the community grows. I see Him working in and through those in the wider community - in our acquaintances and friends scattered throughout the world. And I see God at work in the lives of strangers who have somehow heard about Kol's story and are doing what they can. It's obvious, from the joy and pride that I see in people's faces, and hear in their voices when they are sharing about their fundraising efforts, or about how they are praying for Kol, that they too are benefiting from helping us. And I think that's a very cool thing. God is working through our family's difficulties, and good things are happening because of it. It's wonderful to see others getting closer to the top on the hill.

Monday, February 13, 2012

Routine

It's been wonderful being home and trying to get back into our normal routine. The kids went to almost all of their band, piano and voice lessons last week, we are starting to dig ourselves out from under all of the mess we left behind (although I must admit that the christmas tree is still up - the decorations are put away, though!) and we are all getting to relax. I feel like I can finally breathe again, and the muscles in my neck that were spasming while we were in Oklahoma have relaxed.

Kol still gets tired easily, and occasionally has naps during the day. He's always ready to sleep by about 9:00 - and even asks to go to bed. He still has a constant low-grade headache, but he usually doesn't want to take anything for it. He is also still on the steroid prescribed by his oncologist here.

We decided to do another round of the DMSO treatments at home, so Kol still has the PICC line, and is still being hooked up to an IV every day. We got training at the clinic before we left on how to set up the IV, what to watch for, and how to give an IV using gravity feed as opposed to the pumps that are usually used for IVs. It usually takes about an hour to an hour and a half for Kol to get the full treatment. Today is day 9 already, and he is hooked up to the IV right now, playing on the laptop. Because he is still getting the DMSO, he still smells like sulfur - or like garlic, or slightly spoiled milk, or spoiling cabbage or broccoli. I can't quite decide what the smell actually is most like. It varies from day to day, I think. It's not really that bad, and we have gotten used to it - mostly. If you want to read more about DMSO, this is a decent place to start. The chemical name is (CH3)SO.

We got the results from the second PET scan last week. Kirk's comment regarding the results is that "we are learning patience". A wise lady told him that it's not patience, it's endurance. We are in it for the long haul. The results of the PET scan were inconclusive. Or rather, the scan really told us nothing. There were changes in Kol's brain, but it's impossible to tell, at this point, what the changes are from. That's the short answer. In detail, there was more swelling around the tumour site. Increased swelling is often a sign of tumour growth. However, the tumour itself was not visible at all on the scan. That means that either the tumour is dying (and therefore wouldn't absorb contrast) and the swelling is due to the dead tissue, OR, that the increased swelling blocked the tumour from being able to absorb the contrast. If the tumour didn't absorb contrast, it wouldn't be seen on the scan.

On another note, this Thursday, February 16th, is the Heading for a Cure fundraiser for the Brain Tumour Foundation. To be honest, we kept forgetting about it while we were gone, or we would have given you more notice. It was a really fun evening last year, with some incredibly good music. This year, Kol (and maybe Kirk and I, too) will be giving a short presentation while the bands are shifting. We probably only have 5 to 10 minutes to speak, and I'm not sure what we'll be talking about yet. However, we'd love to see you there. There is a silent auction in addition to the music and presentations. Kirk says the music will be awesome again, too.

Monday, February 6, 2012

Home at last

We arrived home in Outlook at 2:30pm today. The GPS says that we logged 6571km and nearly 79 hours of driving time since we left home almost four weeks ago. Our bodies say that sounds like the truth. In spite of our weariness, though, we are overwhelmingly happy to be back home. Tears of joy and relief were flowing as we drove into town and followed the familiar route to our house.

As we pulled in to the driveway, we saw a big poster in our window saying "WELCOME HOME FRIGGSTAD FAMILY, love your BLC 'family'", and homemade decorations on the tree out front.

Heart-shaped balloons were attached to the railings of the front porch and plush flowers adorned one of the bushes in the flower bed.
Inside, there was a large basket with fresh fruit on our dining room table, as well as some cards and cheques.
The fridge and pantry were full of food, much more than we remembered leaving in them. Out in the garage, we discovered not only our was our freezer full, but there was a second freezer full of food as well. And we had suppers for both tonight and tomorrow night delivered to our door.

We are overwhelmed and humbled by the love and support our community has shown us. Thank you all so very much. It is so good to be home.

Sunday, February 5, 2012

Touchdown in Riderville!!!

We have arrived in Regina! After a rough night last night (Mari was sick for a while after we went to bed), the morning dawned nice and clear, and we got on the road. Things went very well - there was almost no wait at the Canadian border, beautiful warm weather, money with different colors and big coins, and road signs in kilometers instead of miles. It felt so good to be back in Saskatchewan!

Now we're at my sister's place in Regina - the kids are busy playing with their cousins, and Kristen and I are chatting with Ulla and Greg by the fireplace while supper cooks. Hopefully Bo and Meina and their kids will be able to visit later this evening as well. It feels so good to be here.

And tomorrow, we will hit the road for the final leg of our journey. Country roads, take me home, to the place I belong...

Hello from foggy Bismarck

Today was a very long day - about 13 hours from leaving the hotel in Grand Island Nebraska to arriving at the hotel here in Bismarck North Dakota.

Overnight, a winter storm had dumped a lot of wet slushy snow on the roads - most of the highway advisories in Nebraska were "travel not recommended", but we were simply too impatient to heed them, so we set off mid-morning. Thankfully, plows had been busy on the highways already, and the snowfall had slowed down quite significantly, so aside from reduced speed, things were pretty uneventful.

As we got further north, the roads got better - by the time we reached South Dakota, the roads were clear and dry. However, not long after we crossed into North Dakota, we hit thick fog, which slowed us down even more. At some points, we felt like we were in an airplane, "flying on instruments" - if it weren't for the GPS, we wouldn't have had a clue when the next exits were coming until we were at them.

We did manage to reach our hotel at about 11:15pm without incident, tired but excited about being that much closer to home! Sunday will be a shorter travel day ("only" six or seven hours driving time), and we're all looking forward to seeing family in Regina.

Thank you all so much for the prayers and encouragement!

Friday, February 3, 2012

Greetings from brisk Nebraska!

Today saw us on the road for about 7 hours - not bad, considering that we started in a heavy downpour in Oklahoma, had fog and scattered showers through Kansas, and finished up driving through the possible beginnings of a blizzard in Grand Island Nebraska, with a number of stops for fuel and potty breaks.

Kol had his PET scan this morning - the staff at the scanning center were quite happy to see the difference in Kol's condition since they first saw him three weeks ago. We'll hopefully hear the results of the scan early next week.

Tomorrow, assuming that things aren't completely snowed in here, we'll get on the road in the morning, and hopefully get to Bismarck North Dakota by the evening. Saskatchewan on Sunday!

Thursday, February 2, 2012

Road trip

We're on the road again! We left Tulsa and arrived in Oklahoma City this afternoon. In celebration of Mari's birthday, we went out for a movie (Tintin - very good) and supper (Steak'n'Shake - guilty pleasure), and now we're at our hotel and getting ready for bed.

Tomorrow morning Kol has his follow-up PET scan, and by tomorrow afternoon we should be on the road again - the plan is to make it to Grand Island NE Friday night, Bismarck ND Saturday night, Regina Sunday night, and finally back home to Outlook on Monday.

While it won't be as grueling as our 29-hour marathon drive down here three weeks ago, the days will be long (Saturday will probably be 9 or 10 hours driving time), the quarters will be tight, and we're all overtired, so it won't necessarily be an easy trip. Even so, we are really looking forward to getting home.

Two sayings come to mind tonight - "The journey of a thousand miles begins with the first step", and "It's about the journey, not the destination". We've taken the first step on our thousand mile journey, but this time it's definitely about the destination.

Wednesday, February 1, 2012

The Surprise that Almost Didn't Happen

Editor's note: tonight's post is by Kol's oldest sister, Julianna!

This seems to be the week for new bloggers on here, since Kol's first blog post went up a few days ago, and now here I am. This is Julianna's first blog post!

So today was Kol's last treatment here in Tulsa. Last night, after he and Birgitte went to bed, Mom, Dad, Mari, and I decided we needed to celebrate it, so we sent dad to the Wal-Mart. He came back with balloons, streamers, a big 'Celebrate' banner, some dangling stars, and a Star Wars Lego set in a Lego Star Wars gift bag. Mari and I blew up twelve balloons and stuffed them on the top shelf in Mom's closet before we went to bed.

The plan was that we would all go to the clinic this morning, and just as we pulled into the hotel parking lot Mom would 'remember' that we had to go pick something up. Dad would send me and Mari in to 'clean' while they took the little ones shopping. We would decorate, and Dad would put the room key in the door upside down and rattle it to let us know when they were back. The plan seemed perfect.

Of course, nothing is perfect. Everything went well up until the end of the treatment, when the five of us kids went outside to the van while Mom and Dad stayed inside to talk. We ended up in a fight in the van, and it ended with Mari's fingers getting slammed in the door. I was worried the plan wouldn't work with her fingers hurting, but there were things that she could still do.

On the drive home, Kol started crying that he wanted to celebrate today, but that we had to pack instead. It was a good thing he didn't look behind him, because if he had, he would have seen me with a big smile on my face, trying not to laugh, and he would have known something was up. In the end, he and Mom decided on a celebratory french toast lunch, and the need for ingredients took out the need for Mom to remember to pick something up.

Mari and I took both key cards and went up to the room, put one in, and got a red light. We tried again, and got a red light. The other card didn't work either. We tried again, and again, and again. We couldn't get into our room. Finally I took the keys, left Mari and my purse by the room door, and headed down to the front desk. I glanced out the window on the stairs landing and saw that Mom and Dad hadn't left yet, so I ran down the stairs and got out to the van. They were still there because they wanted us to have a camera for when Kol walked in, and Dad had left to bring it to us just before I got outside. I gave Mom the cards and she went inside with them. It turned out that we had originally told the front desk we were checking out today, so our cards were programmed to only work until today. We got it figured out, and finally Mari and I started to decorate.

After all the problems we had getting this surprise to work, the amazing smile on Kol's face when he walked in was worth it.

We leave tomorrow, and will be home soon!