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


  1. Know our prayers are with you and we will pray for this meeting. Khaya and Ethan especially pray diligently for Kol. I know He is there with you and holding you as only He can do. We love you all.

  2. Praying so much tonight for your family.

  3. I have tears in my eyes as I just read this Kristen. You are so brave and honest in sharing your journey with us, a journey I can't imagine. Thank-you for sharing it with us. Please know that we are praying for you all and you are so much in our thoughts. I am so glad you were able to meet with the Dr. in BC and thankful that he has given you some more direction in what to do in helping/treating Kol. Continued prayers for you!!!