It's been almost 3 weeks since we've updated the blog. I haven't really known what to say. This post is kind of rambling, it needs editing, but I'm too tired, and I just need to share what's been happening around here lately. These weeks have been tougher for us, and for Kol. We've been doing a lot of soul searching, praying, and crying. I've been anxious, jumpy, and on the verge of tears more than I have been for a long time. Kol's headaches still aren't really any better. He still has at least one headache a day, sometimes 2 or more. If Kol can have a nap when he gets a headache, he'll feel better when he wakes up, or else a regular strength Tylenol usually gets rid of the pain. He's not having as many "flash" headaches - the headaches don't usually go away until he sleeps, or gets Tylenol. Last week, Kol had 2 days where he vomited. That was disconcerting to us. The only symptoms of the tumour 2 years ago were severe headaches with vomiting. We don't know what caused the vomiting, but we're very glad it hasn't continued. That said, even 2 years ago, Kol would only vomit occasionally. It happened when the tumour started pressing against sensitive parts of the brain, which forced the brain to adapt and re-arrange itself, which in turn caused the vomiting.
Yesterday, Kol was angry. He was angry at the cancer, at the tumour, at the world, at his sisters, and especially at me for making soup for supper. I don't think I've ever seen him so angry. He was stomping around, slamming books on the floor, scowling and growling. I'm glad that he's finally showing emotion. He's been taking so much of this journey in stride, just accepting what everyone else decides, putting up with the pain, the pokes, the doctor's appointments, the nausea, the hair loss, the cold head, the dressing changes, the PICC line flushes, the diet restrictions, the questions. I'm so proud of him, but I ache for him, too. I wish I could understand what he is feeling, I wish I could read his mind. I have so much to learn from him. There is so much that I want him to know.
When Kol was angry yesterday, we sent him downstairs to bang on the drums. When he came up later, he seemed to be in a much better mood. We're thankful we have those drums. At Christmas, Kol saw a kid just a bit older than him play a solo on a drum set. He loved listening to it, and was waving his arms around with a big grin on his face, pretending to play along. We talked then about getting some drums for Kol, but hadn't done it. Some friends knew how much Kol enjoyed hearing the drums, and just recently decided to go ahead and make arrangements for us to have a drum rental. They've only been here a couple of weeks, but even with the noise, we've appreciated having them. Kirk will head down sometimes to bang on them, and so do all of the girls. I even spent about half an hour experimenting with them one day when I was feeling anxious and worried about Kol. It is surprisingly cathartic to beat up on a set of drums. Annika loves playing them too, however she has to sit on someone's lap in order to reach the drums, and no one really wants to hold her. She has a wicked back swing. We really have to watch closely to avoid getting hit in the head.
Yesterday was a bad day for me, too. Even before Kol got angry, I was angry. Again. I came down the stairs and saw that Kol had fallen asleep on the couch, with another headache. I'm not even really angry at the unfairness of the situation. I'm just angry that Kol is hurting. I'm angry that he might die. I'm angry that we all have to see Kol hurting, and that there's very little that we can do on a moment by moment basis, to help Kol. I'm even angry that Kol's headaches interfere with my plans for me, and that we can't really commit to anything more than a couple of weeks away. I'm selfish - I don't want to see my baby in pain. I hate that there isn't much that I can do. At one point during the afternoon, Annika was fussy, wanting something from the fridge. I opened the fridge door, and the jug of Kol's iced tea (that I had just put away) fell out onto my foot and spilled all over the floor. I just sat down on the steps, and started crying, completely overwhelmed. Annika just put her head on my shoulder, patted my back, and snuggled while I cried.
Kirk, too, has been having trouble concentrating, and being able to focus on work stuff. I think it's actually been better for him in the last couple of days, but last week was tough. It seems that when I'm most upset, Kirk is doing better, and he gets upset on those days when I'm being strong. I don't think we plan it that way, it just happens. We're both wanting to escape lots - just run away. It feels like we've been fighting for so long - it just never ends. I wish the worry - the fighting would be over - but we know that, as long as Kol is alive, we'll always be wondering - always be on our guard. That's a trade-off I'm willing to put up with. I'd rather put up with uncertainty in life, than certainty in death. However, it still is tiring.
Since the headaches aren't getting better, the Dr. in Victoria has recommended that we try using a combination of two alternative treatments. I had researched both of these last year, and they were both at the top of my list of possibilities of alternative options, with DMSO. We were actually in the process of gathering all of Kol's records, and filling in the intake forms to send to the Dr. in Toronto that prescribes one of them when we found the DMSO clinic. I wasn't sure about using it because of the side effects - I'm still uncertain about giving it to Kol. It doesn't feel right - at least not yet. Not like going to Oklahoma did, or like sending Kol to Victoria did. Dr. McKinney can only prescribe this medicine in B.C., so we have to get it through the Toronto clinic. Yesterday, I was trying to gather the information I need to send to Toronto, and I just didn't want to do it. I kept dragging my feet. I think I need more time. But we don't necessarily have more time.
In spite of my uncertainty now, I look back at the decisions we've made in the last few months, and I'm amazed at how things have come together for us. I was uncertain about the side effects of the treatment that seemed the most promising, and then we found the DMSO clinic, which didn't cause the same side effects as the other treatment. We had everything in place for the DMSO, and then Kol had the brain hemorrhage.Looking back, I see that Kol really needed the DMSO treatment, not for tumour treatment, but to help him recover from the bleed. Kol was in a lot of pain after the bleed, and it seemed to be getting worse. He needed more morphine each day, and the Drs. had called in the pediatric palliative care specialist. They told us we could take Kol home, treat the pain and make him comfortable. I think, although there is no way of knowing for certain, that Kol would no longer be alive if we had done that. The improvement we saw from the DMSO was dramatic - although it didn't seem that way at the time. Going to Victoria was also a good choice.
In spite of all of my uncertainty, all of our worry, we keep being reminded Kol is in God's hands. He always has been, and he always will be. We also know that God can certainly heal Kol. We need to continue to trust in God's leading, and in His promises. I fully believe that it was God who made everything come together so perfectly for us throughout Kolbjorn's Journey. He opened and closed the doors that we've had to walk through, and gave us the peace and reassurance that we were doing the right thing. We give thanks for all He's done for us up to this point, for leading us, and for healing Kol. We have many things to be thankful for. I can't explain how or why, but I've believed all along, since before the tumour was found, that Kol would survive this and that God would make things work out. God is capable of performing a miracle, of healing our boy. I know that. It's getting harder to trust with my heart. It's hard seeing Kol in pain, and not being able to help him. It's hard when the doctors at the Cancer Center seem to have given up on him. We're getting tired.
I have a couple of articles I'd like to share. Kirk sent me a link to this first one, from The New Yorker, about a child's isolating illness. There were lots of things that we identified with in the story. It's perhaps a tough read, but it's worth it for anyone who knows a family, like us, who is dealing with a child's illness, and wants to better understand the emotions and the isolation that we've experienced. It's called "The aquarium".
The second is an older article, but it's about one of the chemo drugs that Kol's oncologist wanted to put Kol on in December, when we learned that the tumour is growing again. After reading the article, I think we made the right choice to not give temozolomide (Temodar) to Kol. The article talks about gliomas, not PNET tumours, but from what I understand, primitive neuroectodermal (the PNE in PNET) cells are closer to stem cells than the glioma cells, which theoretically would cause the same reaction in a PNET tumour. I guess you'd have to read the article to know what I'm talking about.