Thursday, January 26, 2012

Improvement, sharks and a report

Today was a quiet day again. The kids and grandpa watched T.V. and played on computers while Kirk and I went out shopping together. It was the first time we've been alone - just the two of us - since the day before we took Kol to the E.R. on January 7. It was nice to relax and reconnect, even if it was just a trip to Walmart. We're still feeling pretty tired - I think I've managed to get 2 nights of uninterrupted sleep in the last two and a half weeks.

Kol is still constantly improving. He is getting stronger and more capable every day. Exactly two weeks ago, we were driving through Regina with a police escort and Kolbjorn was riding in the squad car with his uncle. He was tired and groggy, almost unresponsive and was in a lot of pain. He was getting morphine almost every hour, and he had been sick twice on the drive from Outlook to Regina. We were uncertain whether we should be travelling so far with such a sick kid, and yet I felt peace for the first time in days. The first few days we were here, Kol mostly slept, could barely walk, and was still getting morphine regularly. Tonight, he is sitting at the table in our hotel room, playing on Poptropica. Earlier today he went for a walk with Grandpa to check out some of the stores that are in the little strip mall beside our hotel. It has been 3½ days since he has had any morphine, and he's only had 1 Tylenol tablet since. It's hard to believe we've been through so much in such a short time.

Yesterday we decided Kol was strong enough to go to the Oklahoma Aquarium for the afternoon. We took the wheelchair with us and Kol rode in it most of the time; we did more walking than he felt he was ready to do. It turned out that Kol was pretty grumpy while we were there, so he didn't enjoy it as much as the rest of us did, at least not at first. There was an amazing shark tank with two tunnels under the tank, and a huge dome in the middle. We could see sharks all around us. It almost felt like we were swimming with the sharks. When Kol got there, he finally started to enjoy himself. He really liked the sharks. We also got to see beavers and river otters up close, at feeding time. It was pretty cool.

I suspect the grumpiness was a result of one of the medications he's still on. Dexamethazone is a steroid used to help reduce inflammation and the side effects include irritability and mood changes. I would love it if we could take him off of this medication, but we can't until after Kol's next PET scan. We need to see if the tumour is responding to the DMSO first.

Yesterday we also got the written report from the PET scan Kol had in Oklahoma City on January 13. Among other things, it said that the tumour was 3.2 cm in diameter. That's smaller than what it was 20 months ago, before the surgery, but it's bigger than it has been. Kol will be having another PET scan on our way home to see if there has been any change in the size of the tumour. DMSO interferes with the scan, so we need to wait until it is completely out of Kol's system before he can have the scan. It is completely out of the body in 48 hours, which means that the scan will probably be on the afternoon of Friday, February 3rd. His last treatment in Tulsa will be on the Wednesday, February 1st.


  1. I'm so happy you guys are getting to have some 'normal' time, shopping at walmart, going to the aquarium. Such important things at a time like this. We continue to pray daily for you all. Tell Kol that Khaya prays every day for him. Love you guys!

  2. You have an extrodinary little boy, so brave and strong. We are all routing for him back home and praying for him as well as the rest of you. I can only imagine the rollercoaster of emotions you are going through and pray that you find comfort knowing God is with you in this journey. He does not give us more than we can handle, even though it feels that way at times. May God bless you all and keep you in his care! The Preus's.

  3. Thanks for all the updates. You are all in our prayers.
    The van R's

  4. Hi guys...thinking of all of you...we remember your journey and continue to pray for Kol. Ilyne & Scott visiting us and we have enjoyed looking at Kol's blog together. Love, Jake & Joanne

  5. Kristine and DerekJanuary 29, 2012 at 5:16 AM

    We are so glad to hear for the improvements that you have been seeing in Kol. We will pray for a good report from the PET scan that is coming up on Feb 3!

  6. Ditto from you guys