Saturday, January 14, 2012

Feeling lost, lonely, and exhausted.

I'm sorry we haven't been updating the blog much in the last few days, It seems that we have always had too much going on - things to get done, and not much down time to just sit down and write. Also, we have had pretty flaky internet connections most places, which just makes it frustrating.

Yesterday, Kol got a PET scan first thing in the morning. It went well, Kol managed to charm the staff there, in spite of being in quite a lot of pain. We had to withhold some of his medication, since certain medications may give false readings on the scan. Directly after the scan, we drove 2 more hours to Tulsa to arrive at the treatment center. Since we had copies of recent bloodwork done at the hospital in Saskatoon, Kol didn't have to have blood drawn, and could begin treatment right away. The bad part was that the nurse didn't feel confident in placing an IV (which was not really a surprise - it had taken 5 tries to place one last week in Saskatoon.), so we were sent down the street to the children's hospital to get an IV placed. Once back at the clinic, Kol got his first treatment. It went smoothly, although by the end of the day Kol was so very tired and just wanted to stop hurting. After the treatment, we went to the hotel, had supper, and fell asleep almost immediately.

Yesterday the staff at the clinic helped us arrange a room here at Hospitality House, and we were able to move in today. It's somewhat similar to Ronald McDonald House, I guess, except that it's not just for families of sick kids, and it's run by a local church. It seems to be a nice place. We have a small, one bedroom apartment, with a bit of a kitchen, but it's on the second floor, and we have nieghbors who are also tired from dealing with sick family members, so we're trying to keep the kids quiet. Annika is not co-operating well. We are on the second floor and it's tough for Kol to walk up the stairs, so we need to carry him up. As nice as it is here, (cheap, too) we probably won't be staying long. There isn't room for the big girls, either.

Today has been quieter. For the last week, we've been constantly on the go, operating on adrenalin. There was always something to get done, to take care of. Today, the only things we had to do were check into our new residence and take Kol to meet with his Doctor. We made a grocery run, and Kirk picked up a card for his new cell.

Today has been a tough day emotionally for both Kirk and me. Maybe it's because we're so physically and emotionally exhausted, maybe it's because we're so far from home and from our support network, or maybe we've just come face to face with reality. It's so hard to see Kolbjorn in pain. He doesn't have much appetite, nor does he want to drink much. He has had 2 DMSO treatments now, and there are moments when we see improvements, or at least think we see improvements. There are little, subtle things, like the tone of his voice, the way he moves, how wide open his eyes are, that are encouraging. At the same time, it's easy to put these down to wishful thinking. We know that if this works, healing won't happen overnight, but we're really tired of seeing Kol hurting and being unable to help. I felt this same way last Tuesday - just hours before we made the decision to come to Tulsa.

We need your prayers now more than ever. Within the next week, Kolbjorn will probably be receiving some additional treatments.

As down and as worn out as I am, I still feel that coming here was the right thing to do. It was the best option we had at the time. It was amazing how everything came together for us to go, and how well the trip went. It just felt right. I felt at peace with our decision to do such a risky thing. I don't think I'm second guessing my decision, but I think the reality of it is sinking in. My strength is faltering.

Please pray.


13 comments:

  1. Wish I could be there to give you all a hug. Hang in there - you have an army of prayer warriors behind you. Know that you are loved and missed and not a second goes by in the day that someone is not praying for the outcome that rests in God's hands. To God be the Glory! I am so glad that you are in my life. Love from Mrs W at BLC

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  2. I know the last thing you want to think about right now is money, but in case you hadn't thought about it I wanted to remind you about Telemiracle. The local Kinsmen can put an application in for you and they would likely be able to help out with your accomodation costs. It might make it easier to pay for a place that is better suited to your family....one less thing to worry about. Sometimes it's hard to ask, but that is what they are there for.

    It's OK to let your strength falter. We are all human. Let go for a while if you need to. It is important that you look after yourself during this time as well. My doctor told me once that the brain will take stress after stress after stress until finally it just "pops" and can't take any more. Take time to let loose, take time to cry, take time sleep...it's important to your family that you are well.

    Thinking of you constantly...

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  3. My heart is breaking for your family. I don't have words to say and I wish I was closer to give you a hug. Instead I am asking our Heavenly Father to wrap His arms around you and hug you close. that you will run and not be weary, that you will walk and not faint, that you will be upheld by The right hand of His righteousness, that He will be your Shelter, Refuge and Strong tower. We love you all and keep praying.

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  4. Kirk and Kristen
    I was unable to check blogs while gone so just finding this all out now...please know that our hearts are with you and we will be in continual prayer for Kol and for the whole family. Love darci for all

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  5. When I think about how tired and drained you must have been (and still are), I know that God was with you to get you down there safe and sound. Take care of yourselves and know that we are with you in prayer and spirit. God will see you through!
    T & B

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  6. We've looked at Telemiracle funding, but they won't cover costs if the medical treatment itself is not covered by Sask. Health, which this isn't.

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  7. Praying. I wish I could give you a huge hug.
    -Holly.

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  8. Kristen and Kirk, praying that you would be comforted, that your strength would be renewed, that you would rest well and recover from the long trip that you've made, that the Lord will sustain you, that the treatments that Kol is undergoing would be effective and kill the cancer cells, that Kol would have relief from the pain that he's gone through with the broken blood vessel, and that you would all experience the peace of God that surpassess all understanding! We love you guys! Thinking of you continually!

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  9. Kristen, Kirk and family,
    We join in with all the prayers offered up for you.....You Are Not Alone....

    When you falter....when reality confronts you....when you're "just too tired"........know that the following words were spoken for you........and even when you can't "feel" them, their Truth and Strength never waivers.....we pray they bring you comfort.......You Are Not Alone.......

    "How long must I wrestle with my thoughts and every day have sorrow in my heart? How long will my enemy triumph over me?" Psalm 13:2

    "My eyes grow weak with sorrow;they fail because of all my foes" Psalm 6:7

    "On my bed I remember you; I think of you through the watches of the night." Psalm 63:6

    "My God, my God, why have you forsaken me? Why are you so far from saving me, so far from the words of my groaning?" Psalm 22:1

    "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

    "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." Romans 8:26

    "For this is what the high and lofty One says - He who lives forever, whose name is Holy: "I live in a high and holy place, but also with him who is contrite and lowly in spirit, to revive the spirt of the lowly and to revive the heart of the contrite." Isaiah 57:15

    You Are Not Alone.......

    With An Unending Hug,
    And All Our Love,
    Jo and Greg

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  10. Julianna and Mari are of course missing you guys but they have all there friends here to help make the time go faster for them. I am always amazed by the wisdom and strength your girls show.

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  11. Still thinking of you guys. No doubt it was the right thing to do, if only for the "we coud have".
    Hoping and praying everything goes well!

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  12. We are all thinking of you and praying for you constantly.

    Mark, Heather and Jackson Hedlin

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  13. Dear Kirk and Kristen, Kol, Birgitte and Annika, We are thinking of you all so much. I cannot imagine what you have gone through and what you are going through still. Please know that you are in our hearts and minds and that you will get through this. Please know that we are praying for you all, for strength, comfort, hope and especially for little Kol, that his pain would go away, that he would feel better and ultimately that the treatments take effect and that he would be healed. We are praying that you will find a suitable place to stay and that while you're so far away, you would feel the love, caring and prayers of your church family and your friends here at home that would help ease the pain, frustration and loneliness you're feeling. Love, The Behennas

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