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.