In the last few months we've mentioned the support group sponsored by the Brain Tumour Foundation of Canada - we've really appreciated getting together with others who are dealing with brain tumours, either themselves or in a family member or close friend. We've received some excellent resources from the Foundation, including patient handbooks and a children's story book (all available for free to anyone who asks - the handbooks are absolutely essential!), and they also put on educational events for people to learn more about brain tumours. Now we'd like to give a little back to the Foundation by bringing this to your attention:
"Heading For A Cure" will be a musical evening featuring a variety of performers at the Bassment in Saskatoon. It happens at 8PM on Friday March 4th, and tickets are $15 for adults and $10 for students, with proceeds going to the Brain Tumour Foundation of Canada. There will also be a silent auction. If you're interested, please phone 306-249-2055 or e-mail emmak@sasktel.net for information or tickets. We're hoping to able to attend, and we'd love to see some familiar faces there too!
By the way, this is a "warm-up" to the Saskatoon Spring Sprint fundraiser that will be happening in Saskatoon on Sunday June 5th - you'll likely see more stuff about that here in the months to come, as we're hoping to participate in that as well.
I just realized that in just less than one week, Kolbjorn will begin his 6th (and hopefully last) cycle of chemo. It's hard to believe we've come so far already. Thanks so incredibly much to all of you for being with us on this journey, we've really appreciated your love and support.
Thursday, February 10, 2011
Sunday, February 6, 2011
Freedom
Kol had bloodwork done on Wednesday and his white count was up over 11 (it had been at 0.6 just a week earlier) thanks to the daily injections of G-CSF. That means he is free to be out in public again. His hemoglobin was low, though, which is probably why he has been more tired over the last couple of weeks.
Since Kolbjorn's counts were good, we were able to go ahead with plans for Mari's birthday party. She had 6 friends sleep over. It was noisy having all of those pre-teen girls around, but it was fun. I know they created lots of good memories. Aside from the noise level, it was honestly hard to tell there were so many preteen girls in the house. I really like Mari's friends, and it's a great way to get to know them all better. Julianna is also planning a sleep over for her birthday, so we'll be doing it over again next weekend with 12 and 13 year olds. Julianna has cool friends, too.
Tomorrow (Sunday, so I guess it's actually today) we'll be having family over for a party for all three of our February girls. Mari was 11 last Wednesday, Julianna will be 13 on Tuesday, and Annika will be one next Saturday. Life is good.
Since Kolbjorn's counts were good, we were able to go ahead with plans for Mari's birthday party. She had 6 friends sleep over. It was noisy having all of those pre-teen girls around, but it was fun. I know they created lots of good memories. Aside from the noise level, it was honestly hard to tell there were so many preteen girls in the house. I really like Mari's friends, and it's a great way to get to know them all better. Julianna is also planning a sleep over for her birthday, so we'll be doing it over again next weekend with 12 and 13 year olds. Julianna has cool friends, too.
Tomorrow (Sunday, so I guess it's actually today) we'll be having family over for a party for all three of our February girls. Mari was 11 last Wednesday, Julianna will be 13 on Tuesday, and Annika will be one next Saturday. Life is good.
Monday, January 31, 2011
Food
I've been doing lots of reading and research into food/environmental links to cancer and cancer growth, as well as fighting cancer with food. Since Kol's diagnosis, I've learned about the role inflammation plays in cancer growth, the processes of apoptosis and angiogenesis, and how cancer cells subvert or take advantage of these natural processes to survive. I guess I need to know that I am doing as much as possible to increase Kol's chances of survival. I've always questioned things, never been content to accept it when people say "That's just the way it is." I need to understand why it is that way. If you can explain it to me, then I'm happy. I think I drive Kirk crazy sometimes when I'm talking to salespeople, because I really make them back up their claims, and explain themselves. However, in this case, I think that's a good quality to have.
I find it difficult to believe that there is nothing we can do, in addition to the radiation / surgery / chemotherapy, to combat cancer. I know the doctors aren't very supportive of dietary and lifestyle recommendations - there is little evidence to show whether it is helpful or not, so they dismiss the possibility that diet and lifestyle can influence both our chances of getting cancer, and of surviving it. At the very least, they are hesitant to make recommendations, because they don't have the research to back it up. Unfortunately, food and lifestyle choices can't be patented, so there is little demand for research into their connection to cancer. There is starting to be some research, but it's not enough to convince doctors of it's usefulness yet. I think, too, that people don't want to admit that they may have done something that might have contributed to their getting cancer. I know I don't really want to face the possibility that something I did, as Kol's mother, contributed to his cancer. Since the specific causes for brain cancer are still relatively unknown, I won't be too hard on myself yet, though. In the meantime, I want to know what I can to do improve his/our chances now.
I was given a book called Foods That Fight Cancer: Preventing Cancer through Diet. It is fascinating. It was written by researchers in Montreal who are researching the connection to food and cancer - and are finding that there are many foods that are as effective as pharmaceuticals at killing cancer cells in the laboratory. At one of the Brain Tumour Support meetings, someone recommended Anticancer: A New Way Of Life. This book was written by a doctor who discovered his brain tumour by accident during his research into brain functioning. I highly, highly recommend these 2 books to anyone with cancer, or to who knows anyone with cancer. Read them both. There is overlap between the two books, but they also complement each other well. They are full of suggestions of things we can do to boost the chances of survival. As I read these books, I became more and more impressed with the way God created all things to work together, and how things stop working when we deviate from those plans. There are so many different components of each food that we eat - chemical compounds, vitamins, minerals, acids, proteins, enzymes - many of which aren't even named yet, let alone studied. It amazes me how the components of one food all work together to strengthen the body, and keep us healthy. Not only does each food have vitamins our bodies need to stay healthy, but they contain all those vitamins in the proper proportions for our bodies to effectively use. Each food, in it's natural state, contains the enzymes our bodies use to break down that food. The problems come when food is processed and filled with chemical preservatives and fillers, when food is grown on depleted soil, when animals are force fed corn or soy rather than the grass that they were intended to eat. When this happens, the food we eat doesn't have the nutrients our bodies need, and we get sicker.
As a result of all the reading, we've been trying to change our diets, to reduce the risk of anyone else getting cancer and to improve Kol's chances of survival. We've incorporated lots of the recommendations from the books, and have cut out things like sugar, artificial sweeteners, processed food, white foods (flour, rice) and have cut back on red meat, eating only small amounts of grass-fed meat. It's kind of like living in the "olden days." Before Kol's surgery, I had begun to suspect that he was sensitive to gluten, and was going to try cutting out gluten in his diet, but we never got around to it. Just after Kolbjorn's birthday party, we started him on a gluten free diet. It was fun and challenging trying to learn (very slowly) about gluten free cooking and flours - like quinoa, chickpea, brown rice, millet. I still have lots to learn. Kol has been very co-operative, but not always happy about the changes. He was gluten free for almost 2.5 months, and ate a much greater variety of foods. We stopped the gluten free diet just before Christmas, because I thought it would be too hard to keep it up when we were away. I also wanted to see how Kol's body reacted to gluten once it had been cleared from his system. He's been eating more fruit, and has started enjoying smoothies again, which has been great, and has even been willing to try juiced vegetables. He doesn't always like the juices, but he'll at least try them. He's even started searching online on his own for recipes for gluten free pizza crust and gluten free, sugar free cookies. He doesn't like chickpea pizza crust. He likes Boston Pizza gluten free pizzas.
Modern medicine has come a long way. Doctors and researchers have learned lots, and are capable of healing and curing many diseases. I'm thankful for the doctors who were able to find Kol's tumour, and who were able to remove it. I'm thankful for the care that he has received. But, I think, in some ways, modern medicine has missed the point. They see that people feel better when they eat oranges, decide it's the vitamin C, and then people in their infinite "wisdom" start isolating the vitamin C, and learn that it's not as effective alone than it was when it was consumed with the rest of the orange. I love that God has given us everything we need to be healthy. We just need to learn (re-learn) what those things are, and to learn to trust in God's wisdom, not man's. It's a hard lesson, but I think it'll be a rewarding one.
Since I'm recommending books, one other book that I liked was Cancer: 50 Essential Things To Do. I found this at the resource center at the cancer clinic. The author interviewed thousands of cancer survivors - many of whom were only given weeks or days to live - about the strategies they used. This book is a collection of the dominant themes that arose from those surveys.
Kol is still on house arrest until we get bloodwork done on Wednesday, His white counts were slightly lower last week (on his day 7 treatment) than they have been after other cycles, so we have more G-CSF injections this month and we have to wait longer to get off of house arrest. Hopefully, they will be in the safe range by Wednesday. We have an appointment for a family portrait sitting on Thursday, so I hope he'll be able to go out by then.
I find it difficult to believe that there is nothing we can do, in addition to the radiation / surgery / chemotherapy, to combat cancer. I know the doctors aren't very supportive of dietary and lifestyle recommendations - there is little evidence to show whether it is helpful or not, so they dismiss the possibility that diet and lifestyle can influence both our chances of getting cancer, and of surviving it. At the very least, they are hesitant to make recommendations, because they don't have the research to back it up. Unfortunately, food and lifestyle choices can't be patented, so there is little demand for research into their connection to cancer. There is starting to be some research, but it's not enough to convince doctors of it's usefulness yet. I think, too, that people don't want to admit that they may have done something that might have contributed to their getting cancer. I know I don't really want to face the possibility that something I did, as Kol's mother, contributed to his cancer. Since the specific causes for brain cancer are still relatively unknown, I won't be too hard on myself yet, though. In the meantime, I want to know what I can to do improve his/our chances now.
I was given a book called Foods That Fight Cancer: Preventing Cancer through Diet. It is fascinating. It was written by researchers in Montreal who are researching the connection to food and cancer - and are finding that there are many foods that are as effective as pharmaceuticals at killing cancer cells in the laboratory. At one of the Brain Tumour Support meetings, someone recommended Anticancer: A New Way Of Life. This book was written by a doctor who discovered his brain tumour by accident during his research into brain functioning. I highly, highly recommend these 2 books to anyone with cancer, or to who knows anyone with cancer. Read them both. There is overlap between the two books, but they also complement each other well. They are full of suggestions of things we can do to boost the chances of survival. As I read these books, I became more and more impressed with the way God created all things to work together, and how things stop working when we deviate from those plans. There are so many different components of each food that we eat - chemical compounds, vitamins, minerals, acids, proteins, enzymes - many of which aren't even named yet, let alone studied. It amazes me how the components of one food all work together to strengthen the body, and keep us healthy. Not only does each food have vitamins our bodies need to stay healthy, but they contain all those vitamins in the proper proportions for our bodies to effectively use. Each food, in it's natural state, contains the enzymes our bodies use to break down that food. The problems come when food is processed and filled with chemical preservatives and fillers, when food is grown on depleted soil, when animals are force fed corn or soy rather than the grass that they were intended to eat. When this happens, the food we eat doesn't have the nutrients our bodies need, and we get sicker.
As a result of all the reading, we've been trying to change our diets, to reduce the risk of anyone else getting cancer and to improve Kol's chances of survival. We've incorporated lots of the recommendations from the books, and have cut out things like sugar, artificial sweeteners, processed food, white foods (flour, rice) and have cut back on red meat, eating only small amounts of grass-fed meat. It's kind of like living in the "olden days." Before Kol's surgery, I had begun to suspect that he was sensitive to gluten, and was going to try cutting out gluten in his diet, but we never got around to it. Just after Kolbjorn's birthday party, we started him on a gluten free diet. It was fun and challenging trying to learn (very slowly) about gluten free cooking and flours - like quinoa, chickpea, brown rice, millet. I still have lots to learn. Kol has been very co-operative, but not always happy about the changes. He was gluten free for almost 2.5 months, and ate a much greater variety of foods. We stopped the gluten free diet just before Christmas, because I thought it would be too hard to keep it up when we were away. I also wanted to see how Kol's body reacted to gluten once it had been cleared from his system. He's been eating more fruit, and has started enjoying smoothies again, which has been great, and has even been willing to try juiced vegetables. He doesn't always like the juices, but he'll at least try them. He's even started searching online on his own for recipes for gluten free pizza crust and gluten free, sugar free cookies. He doesn't like chickpea pizza crust. He likes Boston Pizza gluten free pizzas.
Modern medicine has come a long way. Doctors and researchers have learned lots, and are capable of healing and curing many diseases. I'm thankful for the doctors who were able to find Kol's tumour, and who were able to remove it. I'm thankful for the care that he has received. But, I think, in some ways, modern medicine has missed the point. They see that people feel better when they eat oranges, decide it's the vitamin C, and then people in their infinite "wisdom" start isolating the vitamin C, and learn that it's not as effective alone than it was when it was consumed with the rest of the orange. I love that God has given us everything we need to be healthy. We just need to learn (re-learn) what those things are, and to learn to trust in God's wisdom, not man's. It's a hard lesson, but I think it'll be a rewarding one.
Since I'm recommending books, one other book that I liked was Cancer: 50 Essential Things To Do. I found this at the resource center at the cancer clinic. The author interviewed thousands of cancer survivors - many of whom were only given weeks or days to live - about the strategies they used. This book is a collection of the dominant themes that arose from those surveys.
Kol is still on house arrest until we get bloodwork done on Wednesday, His white counts were slightly lower last week (on his day 7 treatment) than they have been after other cycles, so we have more G-CSF injections this month and we have to wait longer to get off of house arrest. Hopefully, they will be in the safe range by Wednesday. We have an appointment for a family portrait sitting on Thursday, so I hope he'll be able to go out by then.
Sunday, January 23, 2011
Status and milestones
Well, that title sounds like a bullet point on a TPS report. Sounds very exciting, doesn't it?
I've noticed lately that a lot of people have been asking us how Kol is doing, which probably means that we haven't been posting enough updates, or that people have stopped reading the blog. Oops. The big problem is that it feels like there really hasn't been a lot of "news" about Kolbjorn, at least for us - we've definitely moved into the "new normal", where regular chemo treatments and doctors visits are just a part of regular life and not newsworthy. He's just started the 5th of 6 planned cycles of chemotherapy, and has been handling it extremely well, just as he's handled all the other treatments - as we've said to many people, if it weren't for his bald head you would be hard pressed to notice any effects from either the cancer or the treatment. He's currently back under "house arrest" while his immune system is low from the chemo, and if past experience is any guide, he should have another week or so before he gets to go out in public again. He's also been gaining weight, and now weighs more than he did when he went in for surgery - he's still underweight, but this is definitely a good sign.
The end of chemo is now in sight - the sixth (and hopefully) final cycle is set to start mid-February, and then he should have another MRI scan in March. After that? We don't know for sure. A lot will depend on the results of the MRI. We talked with Kol's oncologist a bit about this last week, and it sounds like if the tumor is gone, then it's simple - MRI scans every three months for the next couple years, then every six months for a while after that, then yearly for a while more. If the tumor isn't gone, then things are a little more unsure. There could be consultations with a neurosurgeon regarding whether or not to try to go back in for what's left. There may be alternative therapies to be considered. But until we see the results of the next MRI, it's all up in the air. We do know that we will get a bit of a break from treatments at least for a while. We should get a chance to escape for a family trip to Arizona in April, and possibly do a bigger family trip this summer.
So that's it for status. Now for milestones.
Unless I've messed up the math, this should be the 100th post on this blog. It's hard to believe that we've posted that much since we started the blog in the midst of the chaos and uncertainty waiting for Kolbjorn to get out of surgery back at the end of May 2010. This got me thinking about milestones and anniversaries, and I realized that 2011 will see a number of significant milestones and anniversaries that our family will be observing this coming year:
I've noticed lately that a lot of people have been asking us how Kol is doing, which probably means that we haven't been posting enough updates, or that people have stopped reading the blog. Oops. The big problem is that it feels like there really hasn't been a lot of "news" about Kolbjorn, at least for us - we've definitely moved into the "new normal", where regular chemo treatments and doctors visits are just a part of regular life and not newsworthy. He's just started the 5th of 6 planned cycles of chemotherapy, and has been handling it extremely well, just as he's handled all the other treatments - as we've said to many people, if it weren't for his bald head you would be hard pressed to notice any effects from either the cancer or the treatment. He's currently back under "house arrest" while his immune system is low from the chemo, and if past experience is any guide, he should have another week or so before he gets to go out in public again. He's also been gaining weight, and now weighs more than he did when he went in for surgery - he's still underweight, but this is definitely a good sign.
The end of chemo is now in sight - the sixth (and hopefully) final cycle is set to start mid-February, and then he should have another MRI scan in March. After that? We don't know for sure. A lot will depend on the results of the MRI. We talked with Kol's oncologist a bit about this last week, and it sounds like if the tumor is gone, then it's simple - MRI scans every three months for the next couple years, then every six months for a while after that, then yearly for a while more. If the tumor isn't gone, then things are a little more unsure. There could be consultations with a neurosurgeon regarding whether or not to try to go back in for what's left. There may be alternative therapies to be considered. But until we see the results of the next MRI, it's all up in the air. We do know that we will get a bit of a break from treatments at least for a while. We should get a chance to escape for a family trip to Arizona in April, and possibly do a bigger family trip this summer.
So that's it for status. Now for milestones.
Unless I've messed up the math, this should be the 100th post on this blog. It's hard to believe that we've posted that much since we started the blog in the midst of the chaos and uncertainty waiting for Kolbjorn to get out of surgery back at the end of May 2010. This got me thinking about milestones and anniversaries, and I realized that 2011 will see a number of significant milestones and anniversaries that our family will be observing this coming year:
- Annika will celebrate her first birthday in a few weeks.
- Julianna will become a teenager in a few weeks.
- Kolbjorn's sixth and (hopefully) final cycle of chemo will start next month.
- I will become ancient and decrepit (40 years old, that is) in a few months. Strangely enough, when my dear wife passed that milestone she simply became more beautiful, elegant and wise - funny how that works.
- We will observe the one-year anniversary of Kolbjorn's initial diagnosis and hospitalization in late May.
- Birgitte will (hopefully) have been seizure-free for a year in July.
Thursday, January 13, 2011
A New Year
Since the new year began, I've been wanting to write a re-cap of the year, a summary of 2010, and follow it up with our hopes, dreams, prayers for the new year. Every time I think about it, though, I draw a blank. I don't know what to write. How do I say that our lives were turned upside down within just a few hours? How do I honour our experience, validate the pain, the grief, the fears, without sounding like I'm just whining, like I'm a wimp, or not trusting in God? How do I enumerate the joys, the blessings, the answered prayers, without glossing over the fact that there were some incredibly painful times? And how do I say all that without giving the impression that I'm comparing our family's struggles to someone who has "really" suffered?
We've compared this journey through childhood brain cancer to a roller-coaster several times, and it does seem to be an apt analogy. It describes some of the emotional aspects of this journey well, however I sometimes wonder if it is the best analogy over all. A roller coaster, with all of its ups and downs and twists and turns, is a known entity - at least to the track designer and to the operators. Once on the ride, no one can get off, and the ride will follow the preset path until it's over. Nothing, no one can change the ride once it's built. Imagine a roller coaster in a dark room - like one of the ones at Disneyland. The riders know that there will be surprises along the way, but have no clue what they will be. The cars may start going up, and continue going up, and up. They know that at some point, the track will take them back down, but they have no idea if that will happen immediately, or if the ascent will last for 60 more seconds. When the cars do start to descend, will it be a steep descent, or a gradual one, with twists and turns along the way? A roller coaster has a set plan, with twists, turns, ups and downs that are a surprise to the riders, and those on the coaster have no way of altering the course, or of getting off. The only thing they can control is their own attitude. They can choose to enjoy it, to stick it out and make the best of it even if they don't love it, or choose to hate it, and wish that they had never gotten on. Maybe some of us do all of those things at different points along the way. A roller coaster has a specific course course, and a definite ending. When it is over, so is the turmoil and you can choose to ride it again or not.
Another possible analogy is that of a boat on the sea. We were traveling over relatively calm and beautiful waters. We had our dreams, our maps all laid out before us, like pages of a book yet to be written, with our hopes, dreams, and our imagined future. A future where we would watch our children grow up, make new friends, learn about the world, make a difference in their corners, graduate from high school, get married, have children, (hopefully in that order) find fulfilling jobs, and, we pray, serve and glorify God in all that they did. That changed in just a few hours. No one expects life-threatening illness. No one expects to come face to face with the possibility of losing a child. But we did face that reality. Our storm hit. We didn't choose the turbulence, it came, the reason why doesn't really matter. We sailed into a storm. But, unlike on a roller coaster, we can alter our path when we sail into turbulence on our boat. We can't get off the boat, but we can choose how we respond to the storm, and those choices help determine the direction that the boat will take.
Some of the dreams that we had, that we had imagined, will never be. The things we took for granted, that we just assumed would happen may never occur. It is all uncertain now. I know there are never any promises and that any one of us could die tomorrow, but we do come to expect certain things out of our lives, things that we all take for granted. We can't take our future for granted any longer. We have to grieve for the loss of the future that we thought we had. We have to grieve for the loss of the child we had before cancer changed his life, and our lives, forever; before chemo drugs and radiation treatments forever altered Kolbjorn's body, causing untold side-effects and damage to that tiny, trusting boy's body; before we were forced to make decisions no parent should ever have to make; before the certainty of brain damage, memory concerns, more surgeries, vision problems and learning disabilities; before the possibility of stunted growth, late side effects, secondary cancers; before we began to live with the constant knowledge that the tumour could very quickly come back at any time. Our boat sailed into a storm and tossed us all around and at times it felt like we would drown. We have dreams that will not come true, and stories that won't be written. We need to validate that pain. It is a different kind of pain than when we lose a loved one, but it is still a loss. We needed to grieve for that lost future - and still do.
We've seen and met so many people in the last few months who are in pain. Some who have lost their marriages, homes, families as a result of a child's cancer. We've seen children who've died, who have lost parents. We've seen people with chronic illness whose suffering goes unnoticed, because everyone else is too busy to pay attention. These are obvious hurts - easy to see, and painful. But what about those who are hurting in silence? One thing that Kolbjorn's illness has shown us is that we are not the only ones hurting - we all have pain to deal with - our own struggles, worries, illnesses, relationship problems. Some are suffering much more than we are, and others are suffering less. Everyone's hurts are just as valid as ours.
When my dad died, I sometimes wondered if it would have been better to lose him quickly - like in a car crash, or from a heart attack. Alzheimer's took him from us slowly - one piece at a time, over 17 years. It felt like we were constantly grieving the loss of another aspect of him. His memories, his confidence, his insight, his skill with numbers, his abilities, his personality. By the time his body died, there was very little, if any, of the man I remembered from my childhood remaining - except the shell, his body was still my dad's. The person, the personality that I loved, was gone. In some ways, the funeral felt like just a formality - a validation of the loss we had been experiencing for years. Now it was socially acceptable to grieve, because finally the body was gone - but I had already done my grieving, in silence. I realize now that a sudden death wouldn't have been easier. It would just have been different. The regrets would have been different, but it would still have been painful. A loss is a loss.
Society tells us that grief is wrong. That we should be strong, and get on with our lives, to let it go, to put the past in the past, and move on to our future. To go back to work, be productive. Grief is a negative emotion, and we are told that we should focus on the positive. So we bury our pain. But the positives have much less meaning when we have not experienced pain. We take the positive for granted. Like an addict, we need more and more pleasure for it to have meaning. When we're grieving, our bodies are telling us to slow down, to rest, to be introspective - to nurture ourselves. When we nurture ourselves, we take the time to enjoy the small things - the things that we don't even see when we're trying to stay busy to avoid feeling pain. To mourn. To say that yes, this hurts, I hurt. There is always someone out there who is facing a greater tragedy, and it feels that by admitting that I am grieving, I am saying that my pain is more important than theirs. This is so wrong. There is an epidemic of depression in our corner of the world. Maybe, just maybe, it's because we don't allow ourselves to hurt, and as a result we are missing out on the joy that can be found in the mundane. The joy in holding our children's hands, watching them sleep, seeing them smile, hugging them, rocking them to sleep, hearing their hopes and dreams for their future.
I like the analogy of the boat, because we weren't helpless when the storm came. We weren't at the mercy of course designers. We had choices. We could, and did, cling to God, knowing he would keep us on the course that is uniquely ours. We don't know when the tossing will end. I do know that we don't need to be afraid, however, because I choose to let God be in control. We didn't lose our son, and for that we'll be forever grateful. We still have today. We still have time to create memories together, and we're doing just that. We have new stories to write.
Kol said today that this will be the year of change. That is what I pray for. Good changes.
We've compared this journey through childhood brain cancer to a roller-coaster several times, and it does seem to be an apt analogy. It describes some of the emotional aspects of this journey well, however I sometimes wonder if it is the best analogy over all. A roller coaster, with all of its ups and downs and twists and turns, is a known entity - at least to the track designer and to the operators. Once on the ride, no one can get off, and the ride will follow the preset path until it's over. Nothing, no one can change the ride once it's built. Imagine a roller coaster in a dark room - like one of the ones at Disneyland. The riders know that there will be surprises along the way, but have no clue what they will be. The cars may start going up, and continue going up, and up. They know that at some point, the track will take them back down, but they have no idea if that will happen immediately, or if the ascent will last for 60 more seconds. When the cars do start to descend, will it be a steep descent, or a gradual one, with twists and turns along the way? A roller coaster has a set plan, with twists, turns, ups and downs that are a surprise to the riders, and those on the coaster have no way of altering the course, or of getting off. The only thing they can control is their own attitude. They can choose to enjoy it, to stick it out and make the best of it even if they don't love it, or choose to hate it, and wish that they had never gotten on. Maybe some of us do all of those things at different points along the way. A roller coaster has a specific course course, and a definite ending. When it is over, so is the turmoil and you can choose to ride it again or not.
Another possible analogy is that of a boat on the sea. We were traveling over relatively calm and beautiful waters. We had our dreams, our maps all laid out before us, like pages of a book yet to be written, with our hopes, dreams, and our imagined future. A future where we would watch our children grow up, make new friends, learn about the world, make a difference in their corners, graduate from high school, get married, have children, (hopefully in that order) find fulfilling jobs, and, we pray, serve and glorify God in all that they did. That changed in just a few hours. No one expects life-threatening illness. No one expects to come face to face with the possibility of losing a child. But we did face that reality. Our storm hit. We didn't choose the turbulence, it came, the reason why doesn't really matter. We sailed into a storm. But, unlike on a roller coaster, we can alter our path when we sail into turbulence on our boat. We can't get off the boat, but we can choose how we respond to the storm, and those choices help determine the direction that the boat will take.
Some of the dreams that we had, that we had imagined, will never be. The things we took for granted, that we just assumed would happen may never occur. It is all uncertain now. I know there are never any promises and that any one of us could die tomorrow, but we do come to expect certain things out of our lives, things that we all take for granted. We can't take our future for granted any longer. We have to grieve for the loss of the future that we thought we had. We have to grieve for the loss of the child we had before cancer changed his life, and our lives, forever; before chemo drugs and radiation treatments forever altered Kolbjorn's body, causing untold side-effects and damage to that tiny, trusting boy's body; before we were forced to make decisions no parent should ever have to make; before the certainty of brain damage, memory concerns, more surgeries, vision problems and learning disabilities; before the possibility of stunted growth, late side effects, secondary cancers; before we began to live with the constant knowledge that the tumour could very quickly come back at any time. Our boat sailed into a storm and tossed us all around and at times it felt like we would drown. We have dreams that will not come true, and stories that won't be written. We need to validate that pain. It is a different kind of pain than when we lose a loved one, but it is still a loss. We needed to grieve for that lost future - and still do.
We've seen and met so many people in the last few months who are in pain. Some who have lost their marriages, homes, families as a result of a child's cancer. We've seen children who've died, who have lost parents. We've seen people with chronic illness whose suffering goes unnoticed, because everyone else is too busy to pay attention. These are obvious hurts - easy to see, and painful. But what about those who are hurting in silence? One thing that Kolbjorn's illness has shown us is that we are not the only ones hurting - we all have pain to deal with - our own struggles, worries, illnesses, relationship problems. Some are suffering much more than we are, and others are suffering less. Everyone's hurts are just as valid as ours.
When my dad died, I sometimes wondered if it would have been better to lose him quickly - like in a car crash, or from a heart attack. Alzheimer's took him from us slowly - one piece at a time, over 17 years. It felt like we were constantly grieving the loss of another aspect of him. His memories, his confidence, his insight, his skill with numbers, his abilities, his personality. By the time his body died, there was very little, if any, of the man I remembered from my childhood remaining - except the shell, his body was still my dad's. The person, the personality that I loved, was gone. In some ways, the funeral felt like just a formality - a validation of the loss we had been experiencing for years. Now it was socially acceptable to grieve, because finally the body was gone - but I had already done my grieving, in silence. I realize now that a sudden death wouldn't have been easier. It would just have been different. The regrets would have been different, but it would still have been painful. A loss is a loss.
Society tells us that grief is wrong. That we should be strong, and get on with our lives, to let it go, to put the past in the past, and move on to our future. To go back to work, be productive. Grief is a negative emotion, and we are told that we should focus on the positive. So we bury our pain. But the positives have much less meaning when we have not experienced pain. We take the positive for granted. Like an addict, we need more and more pleasure for it to have meaning. When we're grieving, our bodies are telling us to slow down, to rest, to be introspective - to nurture ourselves. When we nurture ourselves, we take the time to enjoy the small things - the things that we don't even see when we're trying to stay busy to avoid feeling pain. To mourn. To say that yes, this hurts, I hurt. There is always someone out there who is facing a greater tragedy, and it feels that by admitting that I am grieving, I am saying that my pain is more important than theirs. This is so wrong. There is an epidemic of depression in our corner of the world. Maybe, just maybe, it's because we don't allow ourselves to hurt, and as a result we are missing out on the joy that can be found in the mundane. The joy in holding our children's hands, watching them sleep, seeing them smile, hugging them, rocking them to sleep, hearing their hopes and dreams for their future.
When the chaos of the storm hit, fear came too - fear of losing our child, fear of serious side effects, fear for his future and ours. Fear. Society tells us that grief is wrong, yet the negative emotion of fear is encouraged. We are surrounded by messages of fear. We're told to fear terrorists, child molesters, kidnappers, the man next to us on the airplane, Muslims, teenage boys. We should be afraid of genetically modified organisms, sugar, chemicals in our food, of potential oil shortages, food shortages, power outages. Grief doesn't sell. Fear does. Fear in the short term is good. It reminds us we're alive, and encourages us to fight or run if we need to. But God tells us not to be afraid. It proves we're not following Him. Fear also robs us of the joy that can be had today.
My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
Ps. 73:26
So do not fear, for I am with you; do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10
Surely he will save you from the fowler's snare and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.
You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.
Ps. 91:3-6
I like the analogy of the boat, because we weren't helpless when the storm came. We weren't at the mercy of course designers. We had choices. We could, and did, cling to God, knowing he would keep us on the course that is uniquely ours. We don't know when the tossing will end. I do know that we don't need to be afraid, however, because I choose to let God be in control. We didn't lose our son, and for that we'll be forever grateful. We still have today. We still have time to create memories together, and we're doing just that. We have new stories to write.
Kol said today that this will be the year of change. That is what I pray for. Good changes.
Thursday, December 30, 2010
MRI results are finally in
We got Kol's MRI results this morning. There isn't really any big news - the tumor hasn't grown, it may be slightly smaller (but not significantly). There isn't any way to tell from the MRI how much of the tumor is dead tissue or how much of it might still be active. There will be another MRI in about three months (hopefully late March or early April, depending on how the radiology department scheduling is).
Our take on the results? We're relatively encouraged by the results - while we would have loved to have seen it significantly smaller (or completely gone, in a perfect world), we're glad to see that it hasn't grown. We'll just continue to be patient, and have faith that it will all work out in the end. Oh, and try not to get ourselves quite as anxious about the next MRI.
Our take on the results? We're relatively encouraged by the results - while we would have loved to have seen it significantly smaller (or completely gone, in a perfect world), we're glad to see that it hasn't grown. We'll just continue to be patient, and have faith that it will all work out in the end. Oh, and try not to get ourselves quite as anxious about the next MRI.
Tuesday, December 28, 2010
Christmas Highlights
Kirk's last post about Christmas illness seemed so depressing that I decided I need to counteract it with some of the positive parts of our Christmas. It was actually a very good time, in spite of the illnesses.
None of us were sick for very long - just a few hours, really, and Kol was really only sick for the drive to Regina - probably because we thought he was sick from the chemo, and gave him some of his anti-nausea medication. He never got a fever, which was a relief. It was actually a good time for him to be sick - he still had a bit of a immune system. The chemo attacks the bone marrow which temporarily stops producing blood cells. It seems to take about a week before the bone marrow starts to recover and begin to produce blood cells again. However, the blood cells live approximately 5-6 days, therefore for the first few days after treatment, there are still some white blood cells available to fight off infection. If he were to get sick tomorrow or Thursday, when the old cells have died off, and very few new ones are being produced, it would be worse.
We spent Christmas with family, which was great. We had a Christmas supper with the Ulvens before we went to Saskatoon, and we were in Regina with Kirk's family for Christmas Eve and Christmas Day. We also got to spend time with the Ulvens once we got back. The kids got to spend lots of time with their cousins, aunts, uncles and grandparents.
I asked the kids on Sunday what their favourite part of Christmas was. I loved their answers. One of the girls said that her favourite part was playing a game with one of her cousins. For another, Christmas supper was the highlight. Another said she loved being with cousins, and her favourite present was the bag her cousin had sewed for her. Kol's favourite part was watching everyone's faces as they opened their presents. I think it's cool that they all appreciated the non-commercial things - people, togetherness, thoughtfulness - as opposed to the things they got. I think their priorities have been affected by Kolbjorn's cancer and Birgitte's epilepsy, just as mine and Kirk's have been. The big girls especially are searching and questioning. We've had some cool conversations with the kids in the last couple of weeks about Christmas, it's origins, and how both the church and society observe the season.
Kirk told me a couple of days ago that the phrase "Tidings of comfort and joy" from "God Rest Ye Merry Gentlemen" keeps running through his mind - like a motto for this Christmas season. We've been craving both comfort and joy for the last few months, and we were able to find some of both throughout the holidays. We pray that we will continue to find comfort and joy throughout the new year.
We also hope and pray that each of you will experience comfort and joy, that the new year will be full of blessings for you, that you will prosper and grow in many ways, and that you will all come to know Jesus in a more meaningful way. If we can be part of your growth, or if we can be of service to you in any way, please let us know. We cannot thank you enough for the support you have given us, through your prayers, gifts, letters, comments, e-mails and more. We love hearing from you, and eagerly check for new comments and messages.
God is good. Life is a wonderful gift. Let's live it to the fullest, resting in God and remembering His goodness in sending Jesus to be our savior.
God rest ye merry gentlemen,
None of us were sick for very long - just a few hours, really, and Kol was really only sick for the drive to Regina - probably because we thought he was sick from the chemo, and gave him some of his anti-nausea medication. He never got a fever, which was a relief. It was actually a good time for him to be sick - he still had a bit of a immune system. The chemo attacks the bone marrow which temporarily stops producing blood cells. It seems to take about a week before the bone marrow starts to recover and begin to produce blood cells again. However, the blood cells live approximately 5-6 days, therefore for the first few days after treatment, there are still some white blood cells available to fight off infection. If he were to get sick tomorrow or Thursday, when the old cells have died off, and very few new ones are being produced, it would be worse.
We spent Christmas with family, which was great. We had a Christmas supper with the Ulvens before we went to Saskatoon, and we were in Regina with Kirk's family for Christmas Eve and Christmas Day. We also got to spend time with the Ulvens once we got back. The kids got to spend lots of time with their cousins, aunts, uncles and grandparents.
I asked the kids on Sunday what their favourite part of Christmas was. I loved their answers. One of the girls said that her favourite part was playing a game with one of her cousins. For another, Christmas supper was the highlight. Another said she loved being with cousins, and her favourite present was the bag her cousin had sewed for her. Kol's favourite part was watching everyone's faces as they opened their presents. I think it's cool that they all appreciated the non-commercial things - people, togetherness, thoughtfulness - as opposed to the things they got. I think their priorities have been affected by Kolbjorn's cancer and Birgitte's epilepsy, just as mine and Kirk's have been. The big girls especially are searching and questioning. We've had some cool conversations with the kids in the last couple of weeks about Christmas, it's origins, and how both the church and society observe the season.
Kirk told me a couple of days ago that the phrase "Tidings of comfort and joy" from "God Rest Ye Merry Gentlemen" keeps running through his mind - like a motto for this Christmas season. We've been craving both comfort and joy for the last few months, and we were able to find some of both throughout the holidays. We pray that we will continue to find comfort and joy throughout the new year.
We also hope and pray that each of you will experience comfort and joy, that the new year will be full of blessings for you, that you will prosper and grow in many ways, and that you will all come to know Jesus in a more meaningful way. If we can be part of your growth, or if we can be of service to you in any way, please let us know. We cannot thank you enough for the support you have given us, through your prayers, gifts, letters, comments, e-mails and more. We love hearing from you, and eagerly check for new comments and messages.
God is good. Life is a wonderful gift. Let's live it to the fullest, resting in God and remembering His goodness in sending Jesus to be our savior.
God rest ye merry gentlemen,
Let nothing you dismay
Remember, Christ, our Saviour
Was born upon this day
To save us all from Satan's power
When we were gone astray
O tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy
Monday, December 27, 2010
Home sweet home again
Sigh. It all seemed like it was going to work out. Nobody got sick overnight Thursday, so we figured that we were over the flu, and OK to go to Regina on Friday. We should have known better.
Friday morning, as we were getting ready to load up, Kol started feeling sick. We got him some ondansetron, thinking (wishfully) that it was just the chemo. About five minutes after leaving the house, he got sick - thankfully, we were thinking ahead enough to have a bucket along for such an eventuality. We stopped at a gas station, and while I was pumping gas, Kristen went inside to rinse out the bucket. By the time she made it back out to the van, Kol got sick again, all over his jacket and pants.
Thankfully, this was also the point where we were meeting up with my brother (to drive to Regina together), and were already planning on passing some of the kids over to his vehicle, so the three older girls switched cars, Kristen got in the back seat to help Kol clean up, and we were back on the road.
The rest of the trip was relatively uneventful, and we thought (wishfully, again) that we had seen the end of the flu. We had a great meal with the family, the kids put on a nativity play, presents were opened, fun was being had... and then Julianna got sick. And then Kristen got sick. And both of them were up through the night being sick, although it didn't seem to last as long as it had lasted for the others.
So, by late Saturday morning, Kristen and Julianna were feeling better, and I thought (wishfully, yet again) that should be it for the sickness. Wrong. Saturday afternoon, I started feeling chilled. I climbed into bed, fell asleep, and then just before supper time, I finally got sick. Fortunately, it didn't seem to last as long as it had for the others, and I managed to get a half-decent sleep that night.
Sunday saw an uneventful trip back home to Outlook, a visit with Kristen's sister for her birthday, and some quiet time together as "just us". As good as it was to be with family this past week, it was even better getting back to home, sleeping in our own beds.
We'll be back in Saskatoon for Kol's treatment on Wednesday (and, hopefully, his MRI results).
Friday morning, as we were getting ready to load up, Kol started feeling sick. We got him some ondansetron, thinking (wishfully) that it was just the chemo. About five minutes after leaving the house, he got sick - thankfully, we were thinking ahead enough to have a bucket along for such an eventuality. We stopped at a gas station, and while I was pumping gas, Kristen went inside to rinse out the bucket. By the time she made it back out to the van, Kol got sick again, all over his jacket and pants.
Thankfully, this was also the point where we were meeting up with my brother (to drive to Regina together), and were already planning on passing some of the kids over to his vehicle, so the three older girls switched cars, Kristen got in the back seat to help Kol clean up, and we were back on the road.
The rest of the trip was relatively uneventful, and we thought (wishfully, again) that we had seen the end of the flu. We had a great meal with the family, the kids put on a nativity play, presents were opened, fun was being had... and then Julianna got sick. And then Kristen got sick. And both of them were up through the night being sick, although it didn't seem to last as long as it had lasted for the others.
So, by late Saturday morning, Kristen and Julianna were feeling better, and I thought (wishfully, yet again) that should be it for the sickness. Wrong. Saturday afternoon, I started feeling chilled. I climbed into bed, fell asleep, and then just before supper time, I finally got sick. Fortunately, it didn't seem to last as long as it had for the others, and I managed to get a half-decent sleep that night.
Sunday saw an uneventful trip back home to Outlook, a visit with Kristen's sister for her birthday, and some quiet time together as "just us". As good as it was to be with family this past week, it was even better getting back to home, sleeping in our own beds.
We'll be back in Saskatoon for Kol's treatment on Wednesday (and, hopefully, his MRI results).
Thursday, December 23, 2010
Suspense.
We still have no information from Kol's MRI, and it's likely we won't hear anything until his next chemo day next Wednesday. I'm not sure if the results are delayed due to the holidays, or if it normally takes this long for the results and either things were unusually quick last time or (probably more likely) we are remembering it wrong. Either way, it looks like we just have to continue being patient and living in suspense for the next week.
Speaking of suspense, we can now continue playing the "Who's gonna puke tonight?" game with our remaining contestants - Julianna, Kolbjorn, Kristen, and me. Our last winner, Annika, kept us on our toes from about 1:30am until 6:30am today. There's nothing quite as much fun as a sick kid, except for a sick kid who isn't able to give you enough warning to get a bucket in front of them.
I sound like I'm complaining here - yes, we're feeling quite tired, and a little frustrated, but really life is still pretty good. Kol is still in good health, and we're actually optimistic that he's going to avoid this bug - the nurses at the cancer center told us that the kids in treatment somehow manage to be less susceptible to the flu, so that bodes well for him. With any luck, we'll all be in good health for Christmas Eve.
And seeing as this is will probably be our last blog post before Christmas Eve, I just want to wish you all a happy Christmas. God bless you all, and thanks so much for your love, prayers, and support this year.
Speaking of suspense, we can now continue playing the "Who's gonna puke tonight?" game with our remaining contestants - Julianna, Kolbjorn, Kristen, and me. Our last winner, Annika, kept us on our toes from about 1:30am until 6:30am today. There's nothing quite as much fun as a sick kid, except for a sick kid who isn't able to give you enough warning to get a bucket in front of them.
I sound like I'm complaining here - yes, we're feeling quite tired, and a little frustrated, but really life is still pretty good. Kol is still in good health, and we're actually optimistic that he's going to avoid this bug - the nurses at the cancer center told us that the kids in treatment somehow manage to be less susceptible to the flu, so that bodes well for him. With any luck, we'll all be in good health for Christmas Eve.
And seeing as this is will probably be our last blog post before Christmas Eve, I just want to wish you all a happy Christmas. God bless you all, and thanks so much for your love, prayers, and support this year.
Wednesday, December 22, 2010
Patience
It's been a long day - actually, it's been a long night and a long day. By Tuesday afternoon, Mari was feeling better, at least enough to travel to Saskatoon with us. Kol's appointments Tuesday afternoon went well, as did his MRI. But then things started to happen. Birgitte woke up around 1:30am Wednesday morning complaining that her stomach hurt, and by 2:20 she was throwing up, which continued until about 6:30am. We got to the cancer clinic on time (around 8:30am) and got chemo started, but weren't able to meet with his oncologist until close to noon (we often meet with him before the chemo is started), at which point we discovered that he still hadn't received the MRI report from radiology, and probably wouldn't get it until later in the afternoon or else Thursday.
So, we are feeling tired, and I am still feeling anxious about the MRI results. Kristen told me that these experiences build patience, which reminds me of all the things I've been told over the years that build character. I'm either in the process of building the patience of a saint, or I'm going to lose my mind. Well, no, it'll probably be a bit of both.
On the plus side, it should be pretty easy for me to fall asleep tonight - I've spent all day practicing. We are almost guaranteed to get the MRI results tomorrow. And so far, no-one else has complained of tummy troubles.
And before anyone else says it, I am well aware that I have very little mind left to lose, thank you very much. :)
"Today is gone. Today was fun. Tomorrow is another one." - Dr. Seuss, "One Fish Two Fish Red Fish Blue Fish"
EDIT: aaaaaaand here we go for more fun. Annika puked all over our bed at 1:20am. Nothing like laundry and showers in the middle of the night to make for a good night's sleep. Also enjoying the fact that she's the only one who can't give us any real advance warning of puking, so likely to be enjoying more laundry as the night continues. Hooray.
So, we are feeling tired, and I am still feeling anxious about the MRI results. Kristen told me that these experiences build patience, which reminds me of all the things I've been told over the years that build character. I'm either in the process of building the patience of a saint, or I'm going to lose my mind. Well, no, it'll probably be a bit of both.
On the plus side, it should be pretty easy for me to fall asleep tonight - I've spent all day practicing. We are almost guaranteed to get the MRI results tomorrow. And so far, no-one else has complained of tummy troubles.
And before anyone else says it, I am well aware that I have very little mind left to lose, thank you very much. :)
"Today is gone. Today was fun. Tomorrow is another one." - Dr. Seuss, "One Fish Two Fish Red Fish Blue Fish"
EDIT: aaaaaaand here we go for more fun. Annika puked all over our bed at 1:20am. Nothing like laundry and showers in the middle of the night to make for a good night's sleep. Also enjoying the fact that she's the only one who can't give us any real advance warning of puking, so likely to be enjoying more laundry as the night continues. Hooray.
Subscribe to:
Posts (Atom)