Friday, March 9, 2012

Youth of the Year, MRI and other tidbits

When I write blog posts, I often have them at least partially written in my head before I sit down at the computer. I've started trying to write blog posts in my head over the last few days, knowing that it's been silent here for too long, but I haven't known what to say. There are so many things that we need to say, and yet my thoughts aren't coming together to form anything cohesive. Here it is anyway. I hope you enjoy it.

Outlook Youth of the Year 2011
Kol has been chosen, by the Outlook Chamber of Commerce as Outlook's Youth of the Year for 2011. Derek Ruttle from The Outlook was here one day last week, and did an interview with Kolbjorn, Kirk and me. The article is in this week's paper (March 8, 2012). Kirk went out early this morning and bought a stack of papers, and Kol enjoyed reading about himself. Kol will be given a plaque at the awards banquet next Thursday - March 15th. I believe banquet tickets are available until Saturday at several Outlook businesses. We were surprised and honoured that Kol was chosen for this. We are obviously very proud of our son.

MRI
We have a date for Kolbjorn's next MRI! When we talked to the Cancer Center after we got home, we learned that Kol wasn't on the list for a follow-up MRI. Kol was considered palliative care when we left, so I think they thought he wouldn't be needing any more scans, even though I asked the Dr. before we left if Kol would still be getting an MRI in March, as scheduled. They then put in an urgent request for an MRI, and we now have an appointment for an MRI on March 14. We'll have to wait longer than we had hoped, but it'll be good to know what is happening in Kol's brain. If we see shrinkage of the tumour or even slowed growth, we'll continue with the DMSO treatments. Kolbjorn's last DMSO treatment was on February 23, and we'll most likely have to wait at least a week after the MRI for results, so that means that we'll have a month off of treatment. That feels like a long time, if there is live tumour remaining. Kol is reading over my shoulder - he says "But if there isn't... then we'll start partying." I think that's a great plan. Man, I love that kid!

Kol's oncologist also seems quite interested in seeing the MRI results, too. He seemed surprised that there was so much of a difference between the two PET scans that Kolbjorn had in Oklahoma.

Thank-yous!
We have received gifts from countess people, businesses, and organizations in order to help with expenses from Kol's treatment and our trip to Oklahoma. It has been overwhelming, humbling, and comforting to know that so many people are willing to hep us out. We're touched beyond words at the kindnesses shown to us. I think Kol's picture has been in the Outlook paper almost weekly since we left for Oklahoma; most of the pictures were of him receiving a cheque.

We want to say thank-you to Kristie Sincennes; Karen Griffith; Cassie Smith and those who donated to her head shaving campaign; the ladies who packed boxes of goodies for our trip; Tia Woudwijk, Amy Reddekopp, Conny Behenna, and Destiny Lockhart; those who donated items to and/or worked at the garage sale and the garage sale shoppers; Riverbend Co-op, and those who attended the lunch at the Co-op; the cooks and bakers who helped fill our fridge and freezer; those who donated to the trust fund account; Steph Murphy and those who attended the steak night she organized; the organizers and participants of the Broderick Fish Derby; the ladies who cleaned our house while we were gone; everyone who has sent cards, gifts, LEGO, e-mails and letters; those who have phoned or left messages; everyone who has given us hugs and words of encouragement; The Outlook; Prairie Centre Credit Union; Outlook Royal Bank; Outlook Scotiabank. This is not a complete list, and I'm sure there are more thank-yous that need to be said, but this is a start.

We also want to thank our families. Thank-you to Ulla and Greg, Robin and Quinten, Steven and Krista, Bo and Miena, Regan, Leif and Heidi - you've all helped in so many ways. You all mean very much to us. To Sandra, Connie and Obert - we cannot thank you enough for all the you've done.

Titanic Exhibit and Science Centre
One of our daughters has been fascinated with the Titanic ever since she first read about it when she was about 8 or 9. She researched it, and read stories about it online, searched the passenger manifest for families, and read through survivor lists for names she recognized from the manifest. When we heard there was a Titanic exhibit at the Science Center is Regina, we promised we'd go. We almost missed it. We went on Saturday; Sunday was the last day. When we told the kids we were going, they found all of our books about it, and even Birgitte asked to go on the computer so that she could research the Titanic. I'm so glad we went. It was very well done. We went to the science center after the exhibit. Kol had fun - he wasn't grumpy, or upset about being there, and we even had to pull him away from an exhibit when it was time to go. Saturday was the first day in a very long time that Kol didn't have an afternoon nap. We went with cousins from Regina, and we spent the evening visiting with family. Kol played with the kids - it was wonderful to see him so animated. The last time we were in Regina, on our way home from Tulsa, he was too tired to play and either slept or read the entire time.

Fun Mail
One day, about a week ago, we got a package in the mail. There is a Grade 9 English class somewhere in Saskatchewan (since I haven't asked for permission to post information about them, I won't say where; if they want to reveal themselves, I'll leave that up to them) who has been following Kolbjorn's Journey. They started reading it, I believe, when they were learning about blogs and blogging in class, and started following it more closely when we went to Oklahoma. I've known the teacher since we were kids -our mothers went to LCBI together and our families have crossed paths often. As an assignment, these kids wrote personal letters to Kol. He had such a blast reading the letters - he even gave up some of his limited Wii time to read them. As he read them, he'd tell me the highlights of each letter, that (kid's name) likes Star Wars Lego too, (another kid) knows someone who has cancer, and (kid #3) has been to Outlook. I'm not sure if I'm proud, as an English teacher, or embarrassed that my home-schooled, 9 year old kid also pointed out spelling and grammatical errors in several of the letters as he read them. Thank-you to this special class. I suggested that Kol write replies to each of the letters, but he seems to think that it might be too much work. We're still scheming about how to answer them. Maybe he can write one, long letter, or perhaps a road trip to visit the class is in order. Kol thinks that is a much better idea than letter writing.

Uncertainty and still feeling lost
We are all (I think) still feeling overwhelmed. It's great to be home, sleeping in our own beds and seeing familiar faces, but we haven't really found any kind of a routine yet, and I miss that. Now that we're home, emotions that were suppressed are coming to the surface. That's a good thing - but it's tiring, too. As soon as we got home, Annika started refusing to put clothes on. I'm sure it's because she knows that, as long as she's wearing only a diaper she will stay home, and she doesn't want to go anywhere. She doesn't want to get in her car seat, either. Birgitte is being "clingy". She wants to be with either me or Kirk all the time. She's worried about being lost, and left behind. She didn't want to go to the aquarium in Oklahoma because she was worried she'd get lost. Kol's been more emotional - he gets angry easily, and he also cries much more easily.

Kolbjorn seems to be doing so much better - he still is improving some every day. He hasn't been as tired, it's been almost a week since he napped in the afternoon. He has more energy, and he's teasing his sisters more. The constant headache he had when we first got home is gone, and he only gets occasional "flash headaches" that come on suddenly, are intense, but only last 5-10 minutes. He's been having headaches like that for a long time - maybe even since his radiation treatments. With Kol appearing to be better, we are all starting to want to get on with life, and start doing all of the tings that we put on hold for so long. I'm feeling pulled in different directions. We need to start doing more school stuff - the kids have been asking to look at more science, and Birgitte really wants to focus more on math (Kol wants to too - he's forgotten a lot of what he knew). I'm motivated to try to catch up on organizing and cleaning that was put on hold while Kol was undergoing chemo and radiation.

There is still so much uncertainty - about Kol's future, about our family's future. We have so many questions and so few answers. Kol appears to be doing better, and we are wanting to find some form of normality. At the same time, we know that everything could change suddenly, without warning, like it did on January 7th, or the day we got the news the tumour is growing. Would we be doing different things today if we knew that the tumour is still growing? I don't know. I want to believe - need to believe - that Kol will live a long, prosperous life. I believe that Kol can be a testament to God's healing power and the power of the human body (that God created), to heal itself, given the proper tools (natural things, that God also created for us.) I am mostly successful in believing that God will heal Kol, and those are the times that I am strong. My faith wavers, though, and I beg God to give me the faith that I need.

Renovations
While we were away, Kirk's dad moved in to our house for a few days, and did lots of work on our house, in an attempt to get our 3rd level (2nd level? upper basement) finished so we could be finally living in our entire house. We've been working on it for a long time (since before Annika was born), but work got put on hold when our priorities shifted. It was amazing how much work he got done and it feels like the end is in sight. Kirk could be moving into his new home office within a month, and the new bathroom should be usable in a week or two.

Trusting in God
Kolbjorn is so much healthier than he was two months ago. I think it's a miracle that he has improved so much. In spite of all of the uncertainty, we know that we need to trust in God - that He will work through us, and guide us if we let Him. Doors were opening and closing concerning the details of the trip to Oklahoma. It was amazing how the details fell into place, and how we just knew we had to go. I did not feel peace at all until we decided that we were going - and I almost felt euphoric at times during the drive. It was risky, and it couldn't have been easy on Kol to drive while in so much pain. But through it all, I knew we were following God's leading. It felt good. God's been good to us. He has done great things in Kol's life. He has given Kol more life. Praise Him.

4 comments:

  1. Congratulations Kol for being "Youth of the Year"....how exciting!! Thanks Kristen for sharing your thoughts, hopes and prayers....you are truly an amazing Mom! I will pray for good results for Kol on the 14th. As always, you are all in my thoughts and prayers...
    Jackie D.

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  2. Carma Hopkins HedlundMarch 10, 2012 at 2:20 PM

    My heart is with you. Continue to lift your family up in prayer!

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  3. Youth of the year is something he certainly deserves! Your whole family deserves an award, not only are you dealing with this as a family, you have brought the entire town (and then some!) together. You are in the hearts of so many people, and long after this journey is finished and all is well again you will remain in my heart. Friggstad family, you guys inspire me.

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  4. After all my talk about Kol finding the spelling mistakes in the letters, I missed my own mistakes in this post. Did you find them? Kol did.

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