The cancer clinic people are very friendly and helpful - but they don't seem to be great at scheduling appointments in advance. Maybe it's just because Kol's treatment is being fast tracked.
At 3:00 this afternoon, we got a call from the Cancer Center, asking if we can come see the Radiation Oncologist tomorrow at 12:45. The receptionist said he could talk to us on the phone, but he would rather talk to us in person to go over the plans for Kol's treatment. He said it would be easier to show pictures. He did say at our last meeting that if he had to focus the beams so that something sensitive (like the pituitary gland, or optical nerve) would be damaged, he would talk to us first. So now we could be facing another 'non-decision' decision; a decision that really is no decision at all. A decision like signing consent forms for surgery, or for allowing the use of contrast media with the MRI. The doctors make it appear that we have a choice, that we have some control - but in reality, we don't. It's an illusion. If we didn't sign the consent for surgery, Kol would have died. If we didn't sign the consent for the contrast media, the neurosurgeon would have only had part of the info he needed, making the surgery more difficult and more dangerous - if he even went ahead with it.
This decision, if there is even a choice, could be the hardest of all. I know I may be getting ahead of myself, worrying about something that may not happen. However, if it's what I think it is, it's not a choice I want to make lightly, or quickly. And we will only have a few hours to decide. When we last saw the radiation oncologist, he talked about how close the optical nerve is to the tumour, and that radiation damage to it would cause blindness. Then, it was a hypothetical discussion. It doesn't feel hypothetical now. We may need to decide whether or not to allow Kol to become blind, or to keep him alive.
Kol is a visual learner. He is very observant; if there is a dog anywhere in sight, he'll find it. Kol loves to read. Since he was 18 months old, his security item has always been a book. He carried one or two books everywhere. The books changed every few weeks, but he always had a book with him. He cried much longer when he had to leave the books in the van when we went swimming than he did when he stepped on a nail. He taught himself to read at 4.5 and 2 months later was reading chapter books. He still almost always has a book with him - it's not uncommon to see him clearing the table, or running after his sisters with a book 'tented' over his arm. Kol also loves playing video games and building lego creations.
We have so many questions running through our minds. What would Kol do if these things were taken from him? What kind of life would he have? Do we tell Kol and let him have some input, or is that too much pressure to put on a 7 year old - and can he really even understand the implications?
Maybe I'm jumping the gun; maybe the doctor just wants to describe the final treatment plan to us. What ever the case may be, we only have 12 more hours until we find out. Maybe that's why the Cancer Clinic schedules so many last minute meetings. So we don't have time to worry.
A change of subject
Kol has been the subject of most of this post - now it's time to focus on Birgitte. She has had 2 more seizures in the last week. One was on Thursday night at the lake after she went to bed. The second was just this evening, just before bed, while I was working on this blog post. Obviously, we haven't put her on the medication yet, although ironically, we just filled the prescription earlier today. We were really hoping that we could keep her well rested - but that hasn't worked well. Birgitte's seizures haven't really been a big deal to me. Kol's problems seem so much more serious, and really, seizures aren't life threatening - they're just a bit scary to see. As a result, I haven't been as consistent as I should be at getting her to sleep. We will not have a consistent routine in the next few weeks, and it will be hard to get her to bed regularly. The medication will make it easier for us in so many ways. Birgitte has always fought sleep - this way we won't have to fight with her. We will be freer to focus on Kol's needs without having to worry if Birgitte will have a seizure while swimming, or climbing, and injure herself. But that feels wrong to me. Kol's illness may be more serious, but he isn't more important than she is. I don't know if it's fair to just medicate her to make things easier on us, or so that we can focus on her brother. I know the medication isn't poison, but it's not harmless, either. She needs attention, too. It will take more consistency on our part to ensure Birgitte gets more sleep - but it will also give us the opportunity to get more one-on-one time with her. That can't be bad.