While Christmas wasn't as bad as we anticipated, the 2 weeks in the middle of January were much worse than we expected. We spent those days remembering last year - the broken blood vessel in Kols's brain, the subsequent hospitalization, and our trip to Oklahoma. We didn't anticipate how tough these days would be - didn't know how painful and vivid the memories of Kol's pain and the frantic trip would be.
Today has been much, much harder than Christmas was. I think the next few days will be tough, as well. I'm sitting here tonight, trying not to remember this night a year ago. Kol and I were going to play a game together. I don't remember what game. (Julianna tells me it was LEGO Ramses Pyramid, which Kol had begged for, and gotten for Christmas.) We had just gotten the table cleared off, Kol was setting up the game, and I was upstairs getting something when Kol started screaming. I thought that he'd had an argument with one of his sisters, and that maybe she hit him. I was wrong. Kol was holding his head and didn't stop screaming. After talking to Kol's oncologist, we took Kol to R.U.H. for a C.T. scan. Kol was in so much pain. He barely moved, and didn't flinch at all during the multiple (5? I think) tries it took to get an IV started. We eventually learned that a blood vessel had burst in the tumour, and that Kol would need to be admitted.
We were worried about Kol then, but I'm much more of an emotional wreck tonight, remembering it all, than I was that night. Maybe it was shock, maybe I just suppressed all of my emotions then. Maybe it's hindsight. We know the rest of the story now, and I don't like the ending.
Today, we all keenly remember this day last year. Throughout the day, the girls especially would comment about what they were doing at this time a year ago. This is the day that we left for Oklahoma. I don't want to remember; I don't want to relive the emotions from this day a year ago. I don't want to remember what it was like seeing my son in so much pain - feeling helpless, hoping that the trip we were taking would be worthwhile, knowing it might not be, and yet feeling absolutely certain that it was what we needed to do. I don't want to relive it, and yet I can't forget - I don't ever want to forget. I don't think I've ever experienced such a range of emotion as I did that day. I was certain we were doing the right thing. I felt peace, yet I was worried, afraid, uncertain. We didn't even know if Kol would survive the drive. There were so many uncertainties, so many questions, so many details to take care of,
After getting all of Kol's hospital discharge papers completed, we picked up our borrowed van, and then drove home. There, we picked up Birgitte, packed last minute stuff, transferred Kol and Annika to the "new" van, said good-bye to Julianna and Mari, and finally left around 5:00pm. On our way out of town, we got a phone call from Ulla telling us that we would have a police escort through Regina, and Kol would be allowed to ride in the police cruiser. We remembered the icy cold night, the stop at the gas station to transfer Kol to the cruiser, the drive through the city, and the icy stop at the edge of Regina to say tearful good-byes and move Kol back to his seat. I remembered the nerve-wracking stop at the border; I wondered that the morphine or the borrowed van would be a problem. As it turned out, only the bag of oranges that had been given to us was problematic.
Today, Annika was playing with a doll I haven't seen for a while. It was the one that Kirk had bought her at Target in Oklahoma City while Kol was having his PET scan last January 13. The doll brought back memories.
We'd arrived at our hotel around 10:30 the night before, and needed to wake up every 4 hours to give Kol his medications. Neither Kirk nor I had slept much more than an hour since we left Outlook almost 30 hours before. For that matter, neither one of us had slept much the night before we left, either. I was so worried we'd oversleep. I was exhausted by the time we got to the PET centre, but we made it on time. Birgitte and Annika were not allowed into the building where the PET scan was done, so Kirk took them to Target while I filled in paperwork.
After the scan, we raced to Tulsa, where the nurse had difficulties finding a vein for Kol's IV. We decided it would be best to go the the near-by children's hospital to have someone more experienced with sick kids put in the IV, then returned to the clinic for Kol's first treatment. We still hadn't found a place to stay in Tulsa, yet, either. It was a crazy day.
Julianna, Mari and Obert arrived in Tulsa. By this time, we were much more relaxed. Kol was doing much better, we were more comfortable with the staff at the clinic, we'd experienced kindness from strangers, we knew our way around Tulsa (at least parts of it) and where to shop, we were settled in our hotel, and we were excited to have our family back together again.
We knew were were doing the right thing - I still feel strongly that we needed to take that trip. There were many good things that came from it. Mostly, it gave Kol quality of life that he wouldn't have had otherwise. While our trip was a good thing, the emotions, the confusion, and the feelings of loss and loneliness that were subjugated to our need to get things done and our worry for Kol at that time resurfaced now. It's been tough.