Thursday, March 29, 2012

Kirk and Kolbjorn are home!

It was a quick, 35 hour round trip to Victoria for Kolbjorn and Kirk (although they were away from home for 48 hours), but they're back now, and we're all very happy to be back together again. The girls and I picked them up at the airport yesterday afternoon. On the drive to the airport, Annika kept saying "Daddy, Kol, home, now." When she saw them come through the sliding glass door at the airport, she ran straight to Kol and gave him a huge hug. It was great to see. Kol had a giant smile on his face when he saw her (and the rest of us), too. You'd think they'd been gone for much longer than they were. Maybe it's just wishful thinking, or maybe I just haven't been paying too much attention to Kol's behaviour at home, but Kol seemed much more energetic, active, and "with it" yesterday after he got home than I remember him being in the days before he left.

We're feeling encouraged by the meeting with Dr. McKinney. Kirk and Kol were at the appointment in person, and I listened in on the phone. Dr. McKinney is a naturopathic oncologist. He provides support for patients who are receiving radiation and chemo, as well as those who, like Kol, are not receiving conventional treatment. I was really quite impressed with him. He knew his stuff, and was very encouraging. He said we've been doing a lot of good things; he was impressed with the medications and supplements we've been giving Kol, however there were a couple of key items missing, and we needed to increase amounts of others. There were also a few supplements that are no longer necessary. He thinks that with the changes he recommended, Kol should be having fewer headaches within a week or two, and he will have more energy. He found that Kol's liver and adrenal glands are showing decreased capacity - the liver damage was most likely from the chemo, and the steroid he was on in January and February probably caused (or at least exacerbated) the adrenal damage. We're now also working on healing these parts of Kol's body.

It's fascinating to me how God created our bodies. Everything is connected. We need every organ in our body to be working in order to be healthy, yet at the same time our bodies are capable of making huge adaptations, and can withstand tons of abuse before we get sick. If we can get Kol's body balanced and working properly, the way God designed it to work, he can fight the cancer much more effectively. That's what I've believed all along. I just haven't really known how to do it.

Tuesday, March 27, 2012

The roller coaster ride continues

It's been another crazy, emotional week; another roller coaster ride. Have I mentioned before that I really don't like roller coasters? I have never experienced so many emotional lows and highs in such a short period of time as I have this past week.

I've always had a temper to match the red hair I had when I was growing up. Sometimes it didn't take much to upset me. I'm ashamed to say, I've spent much more time being angry that I'd care to admit. I wish I were more even-tempered - like my dad - although I suspect that, being a red-head too, he did have his moments. I only ever remember him being angry when we made so much noise so that he couldn't hear the weather forecast on the 6:00 news. We learned quickly not to interrupt him then. I can at least say that I never chased my brother around the kitchen with a butcher knife, like my grandmother apparently did. Since she grew up above her parents' butcher shop, she was probably pretty skilled at using that knife, too. Even though anger is not new to me, I have never felt as angry as I did the day we learned that the tumour was still growing. I spent most of that Friday evening (March 16) and Saturday angry at the unfairness of Kol's situation. Kirk and I stopped at the store shortly after we had received the MRI results, and I noticed a sweet-looking, little, old, white-haired lady enter the store. When I walked past her, I smelled cigarette smoke exuding from her clothes. I was instantly angry that this woman could live long enough to be a sweet-looking, little, old, white-haired lady even though she knowingly chose to smoke in spite of all of the warnings and information about how detrimental smoking can be to one's health, while Kol, who never did anything intentionally to contribute to illness, might never get the chance to become a sweet-looking, little, old, white-haired man. There were times on those days when I just wanted to destroy things - throw a glass vase against a cement wall and watch it shatter, slash tires, break windows - even send a car off of a cliff and watch it crumple - maybe even explode. Maybe I wanted to inflict my pain onto something else. I have never experienced that kind of rage in my life. I don't ever want to again.

On Sunday, Kol, Birgitte and I stayed home from church with the flu. During the day, I kept imagining what it would be like seeing Kol in pain again from the headaches, and not being able to help him. Then I'd think of the thousands of parents, especially those who we've met on our journey through cancer, who have done that - who have watched, almost helplessly, as their children die of cancer. I can't imagine their pain - and I don't want to. I don't want to become one of them. On Monday and Tuesday, Julianna, Mari, Birgitte and Kirk sang in the Outlook music festival. It was a good break from the worry, and it was wonderful to see how much the girls' confidence levels and abilities have increased since last year. On Wednesday, I woke up feeling anxious and needing to get some decisions made. Wednesday wasn't a good day for Kolbjorn, either. He had a headache all afternoon, and needed several Tylenol. Thursday was much better. We got things accomplished, and I was feeling hopeful again. When I really think about it, I don't believe that Kol will die from this tumour. I don't. We were told that two out of three children suffering from an sPNET will die. Kirk said that Kol will be the one in three. I say Kolbjorn will be the one and only. (Or the one?) He will be the one who overcomes cancer in his own, unique, one-of-a-kind, customized way.

On Friday night, we had a family praise and worship time. For a bible reading, Mari chose a psalm at random. It was exactly what we needed to hear. I don't think she could have made a better choice, even if she knew all of the Psalms by heart.

Kirk's sister bought us this CD by Fernando Ortega while Kol was in hospital in January. We didn't listen to it until after we had been in Tulsa for a day or two - which was surprising; often the first thing Kirk does when we get into our vehicle is plug his iPod touch into the the sound system so we can listen to music. This CD was comforting. We all instantly liked it. Once we did start listening to it, we listened to it constantly - which is also surprising; Kirk usually only lets a CD run through once, occasionally twice before putting something new on. We listened to it while driving through Tulsa and Kol and Birgitte both listened to it at bedtime. They still do, actually. Birgitte is sleeping in my room tonight while Kirk and Kol are gone, and she needed to move her CD player to my room so she could go hear it tonight. Whenever I let myself be quiet during the week, I would notice that there were two lines from one of the songs on that CD that I kept hearing again and again. The lyrics are below. I've highlighted the two lines from the chorus that I kept hearing. It kind of felt like God was reminding me to trust Him, and wait for his leading.

I Will Praise Him, Still
When the morning comes on the farthest hill
I sill sing His name, I will praise Him still.
When dark trials come and my heart is filled
With the weight of doubt I will praise Him still.

For the Lord our God, He is strong to save
From the arms of death, from the deepest grave
And He gave us life in His perfect will
And by His good grace I will praise Him still.

Our Next Step
Over this last weekend (March 24 and 25), Kol has been having more headaches again. These aren't just the "flash headaches", but the ones that come and last for a couple of hours, and it seems that only a nap or Tylenol will get rid of these. Thankfully, Tylenol does work. With these headaches came more worry. It's so easy to slip into despair and fear, and, if you're like Kirk, imagine worst-case scenarios. Kolbjorn is also starting to get tired of fighting. When we were in Oklahoma, he said he wanted to die so that the pain would stop. Now, he's just tired.

This morning (Monday) we booked plane tickets for Kirk and Kolbjorn. They will be flying to Victoria tomorrow to see Dr. Neil McKinney - author of Naturopathic Oncology. It's the best book I've read so far on treating cancer. I've read about so many promising treatments and clinics all over the world, but I have no idea which ones will be the most effective for Kol, or which ones are useless. I'm hoping that this Dr. can give us more direction. I will be joining them either by phone, or through Skype. While I'd like to be there, it's not crucial for me to be there in person - the Dr. really only needs to see Kol, so I will stay with the girls. Birgitte needs reassurance that she is important too, and Annika still nurses at night. Mari and Julianna also have activities on Tuesdays. They've missed so many days that I don't want them to get further behind.

Today, I've been feeling excited again. It's amazing how much better I feel when we are doing something constructive and taking action. I don't know if this is the right step, but I believe it is. I guess that is obvious - but, just like when we went to Oklahoma, I have peace about this decision. It was good that we went to Oklahoma, even if the DMSO wasn't as effective against the tumour as we had hoped. It did help Kol recover from the hemorrhaging, and I believe it not only bought Kol more quality time, but it also saved Kol's life. I pray this next step will be as beneficial. It feels like we are being led, slowly, through a dark maze. We can only see a tiny part of the path - that part that is lit by a weak flashlight. We can't see what's ahead, but at least the next step appears solid.
“ Fear not, for I am with you, be not dismayed for I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand.” Isaiah 41:10

Saturday, March 17, 2012

The tumour is still growing

We have the results of Kol's MRI, and the tumour is still growing. In the January CT scan, it was 3.1cm by 3.6cm - it is now 3.9cm by 4.0cm.

We're dealing with a lot of emotion right now - heartbreak, anger, fear, disappointment, denial, sorrow, frustration - and we're not sure what our next step is going to be. Your prayers are appreciated.

Wednesday, March 14, 2012

Scan Day

In just an hour or so, we'll be on our way to RUH for Kol's MRI. While the scans themselves aren't stressful, waiting for the results is a stressful time. A mom of another child with cancer wrote that scan time is like putting a bullet into a gun, spinning the barrel and pulling the trigger, hoping that it doesn't fire. Kirk said that it's more like picking up a random gun and firing it, not knowing if the gun is completely empty, fully loaded, or somewhere in between. Either way, it's a stressful time.

On Monday morning, I woke up feeling incredibly anxious and didn't know why. It took me several minutes to remember that the scan was coming and to realize that that was why I was concerned. Last week, I had a dream that there was one thing missing, one thing that we had to do for Kol, between scans. In the dream, I figured it out, and Kol's follow-up scan was clean.

There are so many treatment options - so many things we can do for Kol, but I know the best thing we can do is pray. Kolbjorn's future is, and always has been, in our Father's hands. When you read this, please take a few seconds to praise God - the God of Abraham, who brought the Israelites out of slavery, who performed countless miracles - for the healing He's done in Kol's body, and pray for continued healing and positive results from this scan. We long for complete healing for our precious son. We give God, Abba, the glory for all He's done for Kolbjorn, and for us.

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.

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.

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.

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.