Friday, January 13, 2012

The present, the past, the future

Where we are: Kolbjorn (along with Kirk, Kristen, Annika, and Birgitte) is in Oklahoma City Thursday night, scheduled for a PET scan Friday morning, and then going through intake and hopefully receiving his first treatment of an alternative DMSO-based therapy in Tulsa later that afternoon. He should be receiving daily treatments for nearly three weeks. Julianna and Mari are still currently in Outlook, but will likely be joining the rest of the family in Oklahoma shortly. Kolbjorn is still in a lot of pain and discomfort, but it is being fairly well managed through regular doses of morphine, as well as anti-inflammatory and anti-nausea drugs.

How we got here: In the literal sense, via a 28-hour marathon drive (with only two drivers powered by desperation and caffeinated drinks) from Outlook to Oklahoma City (over 2300km) in a borrowed van (ours wasn't reliable enough). All things considered, the trip actually wasn't nearly as bad as it could have been (we had an absolutely wonderful short stop in Regina for Kol to see some of his cousins, and to get ride in a police cruiser with his uncle - hopefully the only time he ever rides in a police car while wearing pajamas and under the influence of morphine), and we have learned to love GPS navigation (except when the voice guidance starts to get bossy when you leave the plotted course to fill up with gas, have bathroom breaks, etc.). Despite complications, including finding the right schedule for Kol's morphine doses, dealing with physical and emotional exhaustion for the drivers, and a troublesome cell phone (currently unable to send or receive phone calls or texts, or to check voice mail - it's about as useful as a small brick), we arrived at the hotel late Thursday evening, got Kol settled in bed, and finally got a useful Internet connection (the WiFi at RUH was very unreliable for most of the time we were there - one of the reasons why we haven't updated the blog until now).

In the less literal "how did we end up in this situation" sense, it's been building a very long time. Almost from the minute of Kolbjorn's original diagnosis back in June 2010, Kristen has been researching alternative treatments, building up a list of potential "plan B" options in case conventional treatment proved not to be enough. When we received the results of Kol's MRI in December, she began searching out doctors and clinics that would be able to provide these treatments. The search was hampered by holiday office closures, doctors on vacation, and our own busy Christmas season, but eventually we found a clinic in Tulsa that offered a comprehensive treatment program that included almost all of our top choices for alternative treatments, that wouldn't have the toxic side-effects of conventional radiation and chemotherapy, and we began making plans to take Kol down to Tulsa.

This past Saturday morning, just hours before the blood vessel burst in Kol's tumour, we had gotten confirmation from the clinic that they had received most of the necessary medical records and information, and that they would begin the process of scheduling a pre-treatment PET scan, which would be followed shortly by treatments. Kirk was going to take a few weeks off of work and fly down to Oklahoma with Kol, and other family members might join them at various times during the treatments.

All those plans burst when the blood vessel did. Suddenly Kol was unable to fly (the changes in air pressure would amplify the pain and discomfort caused by the swelling in his brain), suddenly the time we thought we had to get things ready (for example, renewing Kol's passport) vanished, replaced with a sense of overwhelming urgency and near panic. As Obert (Kol's grandpa) commented at one point, doors seemed to be opening and closing incredibly fast - it would seem like one option would work, then almost seconds later it would be ruled out, followed swiftly by another promising option. The final decision for Kristen and Kirk to go together with Kol (and to bring the other siblings either immediately or else soon afterwards) wasn't made until just a few hours before we left for Oklahoma.

Where do we go now: The plans for Mari and Julianna joining the rest of the family are still being worked on. We don't even have our hotel in Tulsa booked yet. We're just concentrating on getting Kol to Tulsa as quickly as possible after the PET scan, and working out the details there. We have no guarantees that this treatment will be effective, and we know it may be controversial - but we have to try, and the conventional options are just as unproven in terms of their effectiveness, and their side-effects are much, much worse. We're flying a lot by the seat of our pants, but we have faith that somehow, in the grand scheme of creation, it will all work out... eventually.

I'm sure I (Kirk) am missing some details here that Kristen will add in later, but we wanted to get something up to let everyone know what is going on. Thank you all so much for the encouragement (hugs, phone calls, cards, emails, comments, etc.) and for the prayers. We are overwhelmed at how much support we have received from our family, our friends, our community, and even complete strangers who happen to find out about our situation. May God continue to be with us, to watch over us, to guide us in decisions yet to be made, and to fill our hearts with His love, His strength, His joy, and His comfort.


  1. Dear Kristen and Kirk, it was so good to hear an update on Kol...I totally did not anticipate hearing that you have been on a 2300 Km journey. You are amazing parents. May the Lord be with you and especially with Kol. Our love, Jake and Joanne

  2. Glad to get the update and that you are there safely. Our prayers will continue here at home until we see you again. You guys are just amazing - all of you! Love from Mrs. W at BLC

  3. So great to read this update and know you have arrived. We continue to pray, pray, pray. We know you have so much love and support from so many people in many different places and I hope you feel that in a very real way as you go through all that this day will bring. Whenever I pray for you I think of your previous postings and the song "To God be the Glory" pops in my head. I will be raising my voice in that song today as I pray.
    Love, the Luedtke Family

  4. We are praying so much for each of you. Khaya especially has not forgotten to pray for Kol daily. We lov you and know that God will work out all the details. Love and hugs.

  5. Oh Kirk and Kristen my heart goes out to you! I will bring your situation to prayer with the Teen Missions team and will carry those prayers over to Cameroon when I go. You are an amazing family and it is truly amazing to see parents who will do everything they can to see their little boy well again!

    You still sound like you have your sense of humor through all this, thankfully (cell phone is like a brick! lol)

    I love you guys! May God be with you as you travel.

  6. I'm glad that you are there safely, our family is praying for Kol and your family.

  7. Kirk and Kristen, I am happy to hear that you have made your trip safely. Traveling with little ones is never easy at the best of times, let alone driving 28 hours straight through. We are praying for all of you, and those involved in these new treatments. Please let Kol know that his list of books has inspired us to create our own. It was especially the "50 Dangerous things you should let your kids do" that caught my interest. I have since bought it (as well as one called Geek Dad). Anyways, you are in our prayers.

    Gina et al

  8. We are praying for you and praying for the therapy to be successful! You are doing the right of luck!

    Stacey Sereda

  9. We echo the thoughts of all the previous comments and add our voices to the chorus of prayers.......

    We ask in Jesus' name that this therapy/treatment has a very positive outcome......yes, complete healing for Kol!.......and we agree with the post before ours, that you are doing the right thing by trying......God will attend to all the details.........

    And as a previous comment also said....."To God Be The Glory" indeed! Keep that anthem close in your heart and cling to we will do on this end too........

    We will stay in touch through the blog for now......we hold you close each day.......know that you are loved......and give Kol an extra high five from us!

    Love to You Oklahoma and at home......
    Jo and Greg

  10. I did a google map search to see how far away from home you are in the deep south. What a journey! Thankful for God's provision as you covered those miles over 28 hours with your kiddies in the van. Kol does not leave my thoughts and we life him in prayer throughout the day. Thinking of you and sending our love and prayers. Jake & Joanne

  11. All I can say is WOW-you are an amazing family! Sending all our positive energy your way...let's keep all the right doors opening for you. Thinking of all of you and thanking you for the update. The Fisher family :)

  12. Kristine and DerekJanuary 14, 2012 at 7:23 AM

    You have been in our prayers continually! We love you guys! Glad to hear that you have made the trip safely! Praying for strength and peace for your family as you walk through this DMSO treatment for Kol. We pray for healing of the broken blood vessel causing him pain and removal of the cancer cells from his body. We know that our heavenly Father is able to heal Kol. We will continue to pray! Looking forward to hearing more details as you are able to share. Love you all!

  13. Our thoughts are with all of you...

  14. My prayers are for Kol- that God holds his hand and cares for him as he goes through the treatments and for dad and mom to have the strenghth and for the Kol's sibling to be okay while mom, dad and Kol are away. Heather Anderson

  15. THinking of you Kirk and Kristen as you take a new path with Kol. You are in our thoughts and prayers. I trust that God gives the knowledge of each choice we make and He will guide you all as you make this journey into new territory with Kol. I admire you for trusting God and following where He leads you.
    Jody and Family

  16. Oh heart is with you. In these day to day huge hard moments...praying indeed that His love, strength, peace will be all around you. Praying you can feel and know His intimate care over you. Love and many prayers. Darci