We're just getting ready to go to Saskatoon. I'm finding it hard to think about anything other than the MRI. We're more worried that we thought we'd be; certainly much more that we were for the last one. We knew last time that the last MRI wouldn't tell us much. This one is much more conclusive.
Kol has had a cough since his radiation - the radiation probably caused some irritation. He usually only coughs a bit in the morning and evening, if he goes inside/outside, and if he runs. It's gotten worse in the last few days. He had trouble sleeping last night, and woke coughing several times. I have also developed a cough and congestion over the weekend. We don't know what this means for the MRI. The coughing might prevent Kol from being able to lay completely still, and they won't sedate him if he has any chest congestion.
Mari ended up with the flu last night. It is probably the worst time to get it. She is upset that she has to miss the OES concert. She would have been singing in the choir and playing with the band, but she was awake much of the night and has been sleeping most of the morning. Also, Kol's immune system will be getting weaker after the treatments on Wednesday and Thursday, so if Kol gets it from her, or if the flu goes through our family, he could be really quite sick. I just hope the immune support we have him on will be enough.
We don't know what our plans will be for the holidays at this point. The plan at this point is to spend them with the Friggstads. We may just end up at home. Home is good, too - especially when you're sick. It's a good thing that we're flexible.
Tuesday, December 21, 2010
Friday, December 17, 2010
Another Countdown
We are in a good phase of treatment now. Kol's counts were higher last week so we have been able to get out a bit more during the last 10 days. The best part is that we still have another week of relative freedom. We have rediscovered Kol's love of mandarin oranges; he has been eating them constantly. Kol isn't the only one that loves them - in the last 6 weeks, we have gone through roughly 190 lbs of mandarin oranges. Probably as a result of all of the oranges he's eaten, Kol has started gaining weight. He is now back to the weight he was at when he was first admitted to the hospital just prior to his surgery. He is still pretty skinny - size 4 pants fit him around the waist, so the size 8 clothes that fit him in the length are way too loose. Kol's hair has also started to grow back. We were told that although the chemo doesn't cause hair loss, since Kol's hair was already gone due to the radiation, it would prevent the hair from growing back. The girls have jokingly called Kol "peach" because of the fuzz that is coming back. It's not really long yet, but it's there hiding underneath the chemo caps and toques that he always wears (even when he sleeps).
We still have just under a week until round 4 of chemo starts - on December 22nd. There is a lightness, freedom, or happiness around the house now, which is good to see. We are enjoying time together, and have started getting into more of a routine with homeschool and chores.
The next MRI has seemed so far away, so it's been easy to put it out of our minds, and just try to live each day as it comes. However, since we are now only 5 days away from the scan, it's becoming much more prominent in our minds. We can't wait for the day to come, and yet we're dreading it. The waiting is tough. The MRI itself is such a little thing - Kol just gets to watch a movie while it is taking pictures of his head - but those pictures are going to dictate how we live our lives in the next few months - and potentially for years. They will give us an idea of what is happening with the tumour - if it is growing, shrinking, staying the same. From those pictures, we will learn what kinds of decisions we will have to make. I pray the decisions will be easy. They will be easy if the tumour is gone, or even shrinking. I'll even be happy if it's just not growing at this point.
Please pray that we will get good news following this next MRI. Pray for health, and healing, and comfort for the rest of us.
On the same day as the MRI, we will be meeting with a psychologist, who has had experience with brain injured children. We will get information on counseling options, and some help in dealing with some of the inevitable emotional issues we're all facing as a result of the tumour and subsequent treatment. This psychologist is also a neuro-psychologist, and is planning on doing some neurological assessments on Kol after his chemo is finished. From that we will hopefully learn what kind of brain damage, if any, has been caused by the surgery, radiation and chemo and how to help Kol overcome any shortcomings he may face. Please pray that this meeting goes well.
The OES Christmas programs are also on the 21st. Mari will be involved in these, which means that we will go to Saskatoon in early afternoon for the meeting with the psychologist, and then one of us will come back for Mari's evening performance. Then we'll go back to Saskatoon with the girls for the start of round 4 of chemo the next day. It's not the best arrangement, but it will work. We think it is just as important to make it to Mari's program as is it to see the psychologist with Kol.
It still feels like we are on a roller-coaster ride; I'm sure it will be like this for a long time, but I've had a few emotionally difficult days lately. I think I said earlier that one wise person told me that grief and understanding come in waves. I guess I was ready for another wave. When I was feeling lowest, God sent just what I needed. A phone call, an offer of help from a friend, an afternoon out with my husband, time to sleep in, and freedom to cry. More little things; little things that mean a lot. As traumatic as this experience has been, I am extremely thankful for the lessons that I am learning. God is good; great things He has done.
We still have just under a week until round 4 of chemo starts - on December 22nd. There is a lightness, freedom, or happiness around the house now, which is good to see. We are enjoying time together, and have started getting into more of a routine with homeschool and chores.
The next MRI has seemed so far away, so it's been easy to put it out of our minds, and just try to live each day as it comes. However, since we are now only 5 days away from the scan, it's becoming much more prominent in our minds. We can't wait for the day to come, and yet we're dreading it. The waiting is tough. The MRI itself is such a little thing - Kol just gets to watch a movie while it is taking pictures of his head - but those pictures are going to dictate how we live our lives in the next few months - and potentially for years. They will give us an idea of what is happening with the tumour - if it is growing, shrinking, staying the same. From those pictures, we will learn what kinds of decisions we will have to make. I pray the decisions will be easy. They will be easy if the tumour is gone, or even shrinking. I'll even be happy if it's just not growing at this point.
Please pray that we will get good news following this next MRI. Pray for health, and healing, and comfort for the rest of us.
On the same day as the MRI, we will be meeting with a psychologist, who has had experience with brain injured children. We will get information on counseling options, and some help in dealing with some of the inevitable emotional issues we're all facing as a result of the tumour and subsequent treatment. This psychologist is also a neuro-psychologist, and is planning on doing some neurological assessments on Kol after his chemo is finished. From that we will hopefully learn what kind of brain damage, if any, has been caused by the surgery, radiation and chemo and how to help Kol overcome any shortcomings he may face. Please pray that this meeting goes well.
The OES Christmas programs are also on the 21st. Mari will be involved in these, which means that we will go to Saskatoon in early afternoon for the meeting with the psychologist, and then one of us will come back for Mari's evening performance. Then we'll go back to Saskatoon with the girls for the start of round 4 of chemo the next day. It's not the best arrangement, but it will work. We think it is just as important to make it to Mari's program as is it to see the psychologist with Kol.
It still feels like we are on a roller-coaster ride; I'm sure it will be like this for a long time, but I've had a few emotionally difficult days lately. I think I said earlier that one wise person told me that grief and understanding come in waves. I guess I was ready for another wave. When I was feeling lowest, God sent just what I needed. A phone call, an offer of help from a friend, an afternoon out with my husband, time to sleep in, and freedom to cry. More little things; little things that mean a lot. As traumatic as this experience has been, I am extremely thankful for the lessons that I am learning. God is good; great things He has done.
Sunday, December 5, 2010
A Typical Treatment Day
Here's an overview of our day on November 24th - day 0 of round 3 of chemotherapy. The 3 big girls stayed with grandma and grandpa that day, and Kirk spent part of the day working on site for a client, so it was quiet. When the girls are there too, they'll keep busy doing crafts, playing on the Wii, watching T.V., or playing board games. It is actually quite a fun, relaxing day. We limit "screen time" at home - but they can have as much during these days as they want.
8:30 Arrive at the Cancer centre (oops - we were late.)
9:00 Blood draw. This is only done on the first day.
9:05 IV inserted, hydration started. This will run all day to flush the 2nd chemo drug (cyclophosphamide, or cyclo) through Kol's system faster, in order to minimize intestinal tract damage. It also causes him to make frequent trips down the hall to the bathroom
9:15 Visit with Dr. (neurological check, physical exam) (This only happens on Wednesdays, or day 0 of the treatment cycle.)
9:25 Kirk left to do some on-site work for a client.
10:00 Visited with the family of a child with leukemia who we've seen before at the centre.
10:15 Met a child who had a medulloblastoma, also called an iPNET, 11 years ago, and who is suffering from some side effects of the treatment.
11:35 The blood chemistry came back fine, so the pre-meds were started. These run over 15 minutes, and include an anti-emetic and a steroid.
11:55 First chemo drug started. It goes in over 15 minutes, too. (Kol only gets this drug on the Wednesday, or day 0 of treatment)
12:15 Second chemo drug started. This one runs for an hour. It is actually a combination of several drugs and includes an antidote to the chemo drug. One of its metabolites can cause bleeding in the intestinal tract, so the antidote binds with that metabolite to prevent damage.
12:30 Lunch.
1:15 Cyclo finished, hydration continues.
1:00 Meet with the research associate regarding consent for COG registry.
2:00 Kirk got back.
3:30 Second dose of the antidote started. This runs for 15 minutes.
4:00 The IV was finally disconnected from the PICC, the PICC was flushed.
4:10 The dressing protecting the PICC line was changed. This is probably the most traumatic part of the day for Kolbjorn.
4:30 Leave the Cancer Center.
5:00 Arrive at grandma and grandpa's.
7:00 Kol got the 3rd dose of the antidote. This dose is taken orally. It is nasty stuff.
7:30 Kol got another dose of the anti-emetic.
8:00 Kol fell asleep on the couch. He usually doesn't go to bed until around 9:30.
Then we go back the next day for almost the same thing. The second day is slightly shorter, because the first chemo drug is not given that day, Kol doesn't see the Dr., and we don't need to wait for the blood chemistry results to begin the second chemo drug.
So that is a typical day of treatment, It's not too exciting - almost boring, but still long and tiring. We'll be glad when they're done. Day 0 for the next cycle is December 22nd. Kol is handling these treatments well, and we pray the second half will go as smoothly.
Thank-you for praying for us. Thank God, for what He is doing in our lives.
8:30 Arrive at the Cancer centre (oops - we were late.)
9:00 Blood draw. This is only done on the first day.
9:05 IV inserted, hydration started. This will run all day to flush the 2nd chemo drug (cyclophosphamide, or cyclo) through Kol's system faster, in order to minimize intestinal tract damage. It also causes him to make frequent trips down the hall to the bathroom
9:15 Visit with Dr. (neurological check, physical exam) (This only happens on Wednesdays, or day 0 of the treatment cycle.)
9:25 Kirk left to do some on-site work for a client.
10:00 Visited with the family of a child with leukemia who we've seen before at the centre.
10:15 Met a child who had a medulloblastoma, also called an iPNET, 11 years ago, and who is suffering from some side effects of the treatment.
11:35 The blood chemistry came back fine, so the pre-meds were started. These run over 15 minutes, and include an anti-emetic and a steroid.
11:55 First chemo drug started. It goes in over 15 minutes, too. (Kol only gets this drug on the Wednesday, or day 0 of treatment)
12:15 Second chemo drug started. This one runs for an hour. It is actually a combination of several drugs and includes an antidote to the chemo drug. One of its metabolites can cause bleeding in the intestinal tract, so the antidote binds with that metabolite to prevent damage.
12:30 Lunch.
1:15 Cyclo finished, hydration continues.
1:00 Meet with the research associate regarding consent for COG registry.
2:00 Kirk got back.
3:30 Second dose of the antidote started. This runs for 15 minutes.
4:00 The IV was finally disconnected from the PICC, the PICC was flushed.
4:10 The dressing protecting the PICC line was changed. This is probably the most traumatic part of the day for Kolbjorn.
4:30 Leave the Cancer Center.
5:00 Arrive at grandma and grandpa's.
7:00 Kol got the 3rd dose of the antidote. This dose is taken orally. It is nasty stuff.
7:30 Kol got another dose of the anti-emetic.
8:00 Kol fell asleep on the couch. He usually doesn't go to bed until around 9:30.
Then we go back the next day for almost the same thing. The second day is slightly shorter, because the first chemo drug is not given that day, Kol doesn't see the Dr., and we don't need to wait for the blood chemistry results to begin the second chemo drug.
So that is a typical day of treatment, It's not too exciting - almost boring, but still long and tiring. We'll be glad when they're done. Day 0 for the next cycle is December 22nd. Kol is handling these treatments well, and we pray the second half will go as smoothly.
Thank-you for praying for us. Thank God, for what He is doing in our lives.
Wednesday, December 1, 2010
Running back to Saskatoon
It feels like we just got home from Saskatoon, and we're off again, for another set of appointments. Tomorrow (Wednesday, December 1st) is day 7 of the 28 day cycle, which means that Kol needs to go back to the cancer centre for some more chemo. This will be a shorter day. He'll get some blood work done and see the Dr. Then he'll get another dose of the vincristine he had last Wednesday, and that he got during the summer. Depending on the results of the blood tests, we'll probably get several more doses of filgrastim to take home. We should be able to leave the cancer center by noon.
We also have an appointment with the naturopath for Birgitte. She has been completely off of her epilepsy medication since the end of September. The strange behavior has stopped. Her attention span is much longer, she has started singing and playing the piano, she has started reading, and I'm begining to trust her with Annika. Her eyes are no longer droopy, and her balance is back to normal. We've been able to keep her well rested, and to minimize the stress. It is so incredibly wonderful to have our daughter back. We thank God for her every day. We're thankful also that there doesn't seem to be any permanent damage from the medication; although there are a few lingering behavioral issues, they seem to be lessening as each day goes by. She hasn't had any more seizures, but we've also been able to keep her well rested, and life has settled into a somewhat predictable routine, which has helped. However, there is no guarantee that there won't be more stressful situations in the future. We're not against trying some of the other anti-epileptic drugs, but we'd also like to know if there are other, more natural, options.
In closing, I'd like to share a quote I came across on a blog I was reading recently. It's interesting how this seems to tie in with several conversations I've had over the last week.
Lord, help us to sing in the night.
We also have an appointment with the naturopath for Birgitte. She has been completely off of her epilepsy medication since the end of September. The strange behavior has stopped. Her attention span is much longer, she has started singing and playing the piano, she has started reading, and I'm begining to trust her with Annika. Her eyes are no longer droopy, and her balance is back to normal. We've been able to keep her well rested, and to minimize the stress. It is so incredibly wonderful to have our daughter back. We thank God for her every day. We're thankful also that there doesn't seem to be any permanent damage from the medication; although there are a few lingering behavioral issues, they seem to be lessening as each day goes by. She hasn't had any more seizures, but we've also been able to keep her well rested, and life has settled into a somewhat predictable routine, which has helped. However, there is no guarantee that there won't be more stressful situations in the future. We're not against trying some of the other anti-epileptic drugs, but we'd also like to know if there are other, more natural, options.
In closing, I'd like to share a quote I came across on a blog I was reading recently. It's interesting how this seems to tie in with several conversations I've had over the last week.
"Any man can sing in the day. When the cup is full, man draws inspiration from it. When wealth rolls in abundance around him, any man can praise the God who gives a plenteous harvest… The difficulty is for music to swell forth when no wind is stirring. It is easy to sing when we can read the notes by daylight; but he is skillful who sings when there is not a ray of light to read by -- who sings from the heart… Lay me upon the bed of languishing, and how shall I then chant God's high praises, unless He Himself give me the song? No, it is not in man's power to sing when all is adverse, unless an altar-coal shall touch his lip… Then, since our Maker gives 'songs in the night' (Job 35:10), let us wait upon Him for the music." ~Charles Spurgeon
Lord, help us to sing in the night.
Saturday, November 27, 2010
Home again
It's good to be home again. We're back home after round 3 of the cyclo. The treatments went reasonably smoothly, however Kol was much more tired this time than he has been after the last 2 treatments. He fell asleep on grandma's couch on Thursday night at 8:30.
Kirk was working on a project on site for one of his clients and needed more time, and I wanted to get some shopping done, so we stayed an extra day. We're all pretty tired today, but it's good to be home we're all happy to be back in our own beds.
Kirk was working on a project on site for one of his clients and needed more time, and I wanted to get some shopping done, so we stayed an extra day. We're all pretty tired today, but it's good to be home we're all happy to be back in our own beds.
Monday, November 22, 2010
Little things
I started this post in the middle of September, and then forgot about it while we were getting ready for Kol's birthday party. It's time I made it public.
Throughout this whole trial, "little things" have worked out for us. By "little things" I mean things that are really unimportant in the grand scheme of things, but which certainly make things better, or easier in the moment. Even when we were dealing with big problems, God was there, taking care of all of the little things, making them work out for us. It is reassuring to think that if He cared enough to make the little things work out, He can make the big things work out eventually, too. It's been comforting to know that I don't need to worry about those things. I just knew that they would all come together. I don't know how I knew, but I did. And, if the little things fell so easily into place, then I just knew that the big things would, too. I'd like to share some of these things with you.
At the E.R. in Saskatoon, before the tumour was discovered, Kol was being treated for a migraine. When he felt better after a dose of morphine, at about 4:30 am, they decided to send him home. Someone asked Kirk if he could drive home. When he said no, a cot was brought in for him to sleep on. The morphine wore off around 6:00 am, Kol started vomiting again, and his headache was back. It was then that the decision was made to do a CT scan. If Kol had been back at home when the morphine wore off, we might not have gone back to the E.R. right away - and even if we did, we would have had to wait for Kol to be seen again. The tumour wouldn't have been found until several hours later, and we might have had to wait much longer for the MRI, the neurosurgeon, and an operating room. As it was, the neurosurgeon already had the O.R. booked for Saturday morning.
When we took Kol to the E.R., I sent e-mails about Kol's progress, and the doctors' findings to our family. Everyone responded but Obert and Connie, who were on holiday in Europe. We weren't too surprised, knowing that they would have limited access to computers, depending on what services their hotels would have. However, the night before Kol's surgery, we felt we needed to do more to inform them. Kirk was talking to his sister late Friday night (maybe even Saturday morning) and they decided it was important to contact their parents. For the first time that I can ever remember, Obert had given all of the kids copies of their itinerary, with hotel addresses and phone numbers. Kirk couldn't call Europe from his cell, so Ulla called instead. It turned out that it was the perfect time to call them. They were awake, but hadn't left the hotel yet. The pastor from our church, as well as other friends of ours were on the same tour, and were able to support them. The entire tour group gathered to pray for Kol later that day - while Kol was in surgery.
News of Kol's illness spread fast - we are still hearing about groups and individuals that were praying for Kol while he was in surgery, from all over the world. His surgery took place only 36 hours after we first took him to the E.R. I didn't know he was going to have surgery until 5:00PM on Friday - and the surgery was at 8:30AM Saturday. Hundreds of people heard in those 13 hours, and were praying that morning. There was a youth gathering in Edmonton the weekend Kol had his surgery. Many of the attendees prayed for Kol during his surgery, including the youth group my sister was chaperoning, and a group of L.C.B.I. students.
While Kol was still in the hospital I drove home with the girls for a piano recital. On the way home, I had a flat tire. While I would rather not have had a flat tire, I couldn't have chosen a better place to have one. Sixty seconds earlier I was in the middle of a long line of vehicles, following the pilot truck, with piles of dirt on one side, big machines on the other, and nowhere to pull over. If it had been just a few minutes later, I would have been around a curve, and the construction workers that helped me wouldn't have seen me. I would have had to change the tire by myself, and we would probably have missed Julianna's piano recital.
Kol was given a toy light saber just before his radiation started. One stormy night, just after we arrived at Connie and Obert's for the night, the power went out. Kol's light saber gave us just enough light to help us find the candles, matches, and real flashlights.
The times that we were late leaving Outlook because of a last minute phone call, (or last minute potty runs or other typical chaos) were the times that we had virtually no wait for the pilot car on the highway. When there was more traffic through the city than we expected, we found good parking places at the Cancer Center. The times we couldn't find a decent parking spot was when there were 2 of us, so that one of us could get Kol to his appointment on time, and the other could find a parking spot (usually on the top level of the parkade).
When we couldn't take everyone to an appointment (or they didn't want to go), there was always someone available to stay with Birgitte and Mari, or take them somewhere. When we went shopping, there often seemed to be sales on the things that we needed. We got letters, or messages that said just what we needed to hear. When I needed a connection, someone would call me on the phone. We met people at the Cancer Center or hospital that had answers for the questions that were bothering me at the time. While we couldn't always get our pick of appointment times for the radiation, the times we absolutely had to have specific times (because of other appointments) were the times that it was easy to switch. Then there were the radiation therapists who did such a wonderful job of making the radiation treatments easier for Kol, re-arranged their schedule so that he could go to VBS.
When I was really starting to worry about what I would be doing this year for a homeschool curriculum, I got the results of the standardized tests Kolbjorn and Julianna did in June. That gave me the courage to decide to do something unconventional this year, and buy a fun science program instead of a more complete, traditional curriculum. We are all very excited to build our own remote controlled vehicles, hydrogen cell vehicles, hovercraft, kites, and alarm clocks.
This may sound strange, but even the timing of the discovery was great for several reasons. It was summer time, so there were lots of things for the girls to do to keep busy, and the bulk or the driving occurred in the summer. At 3.5 months, Annika was really at the perfect age to be 'hauled' around the hospital. She no longer a newborn, and we had gotten over most of the initial stresses of having a new baby around. She was still small enough that she couldn't roll over, so it was safe to lay her down on the bed when I needed to help Kol, and she was too young to want to play on the floor. Julianna had just started to babysit, and was very eager to help out, which has been a huge blessing, too.
There have been other, fun things, too, like the day we went out for lunch at Jerry's after an appointment, and it turned out to be the day they were giving away free samples of their new gelato and ice cream flavours. On the day we risked taking Kol to the library in spite of his low blood counts, the library was completely empty. In spite of the short notice, everything fell into place extremely well for Kol's birthday party.
We have come across many people that had connections to us - like the doctor who used to work at the plant Kirk's grandpa built, and whose brother went to L.C.B.I., and the nurse whose brother is married to Kirk's cousin. When we went to the zoo, we met someone who recognized me from L.C.B.I. I don't think she's seen me for 20 years, but she still knew my name. We met a family at the cancer center who didn't know who we were, but who had heard about Kol and had been been praying for him since his surgery.
I know that I feel much better when I look at what is working than when I start to ruminate on the uncertainties. We have lots to be thankful for. God is good. I see that when I start to look at the little things. We still don't have answers, many things are still uncertain, but life will go on, and we will thrive.
Throughout this whole trial, "little things" have worked out for us. By "little things" I mean things that are really unimportant in the grand scheme of things, but which certainly make things better, or easier in the moment. Even when we were dealing with big problems, God was there, taking care of all of the little things, making them work out for us. It is reassuring to think that if He cared enough to make the little things work out, He can make the big things work out eventually, too. It's been comforting to know that I don't need to worry about those things. I just knew that they would all come together. I don't know how I knew, but I did. And, if the little things fell so easily into place, then I just knew that the big things would, too. I'd like to share some of these things with you.
At the E.R. in Saskatoon, before the tumour was discovered, Kol was being treated for a migraine. When he felt better after a dose of morphine, at about 4:30 am, they decided to send him home. Someone asked Kirk if he could drive home. When he said no, a cot was brought in for him to sleep on. The morphine wore off around 6:00 am, Kol started vomiting again, and his headache was back. It was then that the decision was made to do a CT scan. If Kol had been back at home when the morphine wore off, we might not have gone back to the E.R. right away - and even if we did, we would have had to wait for Kol to be seen again. The tumour wouldn't have been found until several hours later, and we might have had to wait much longer for the MRI, the neurosurgeon, and an operating room. As it was, the neurosurgeon already had the O.R. booked for Saturday morning.
When we took Kol to the E.R., I sent e-mails about Kol's progress, and the doctors' findings to our family. Everyone responded but Obert and Connie, who were on holiday in Europe. We weren't too surprised, knowing that they would have limited access to computers, depending on what services their hotels would have. However, the night before Kol's surgery, we felt we needed to do more to inform them. Kirk was talking to his sister late Friday night (maybe even Saturday morning) and they decided it was important to contact their parents. For the first time that I can ever remember, Obert had given all of the kids copies of their itinerary, with hotel addresses and phone numbers. Kirk couldn't call Europe from his cell, so Ulla called instead. It turned out that it was the perfect time to call them. They were awake, but hadn't left the hotel yet. The pastor from our church, as well as other friends of ours were on the same tour, and were able to support them. The entire tour group gathered to pray for Kol later that day - while Kol was in surgery.
News of Kol's illness spread fast - we are still hearing about groups and individuals that were praying for Kol while he was in surgery, from all over the world. His surgery took place only 36 hours after we first took him to the E.R. I didn't know he was going to have surgery until 5:00PM on Friday - and the surgery was at 8:30AM Saturday. Hundreds of people heard in those 13 hours, and were praying that morning. There was a youth gathering in Edmonton the weekend Kol had his surgery. Many of the attendees prayed for Kol during his surgery, including the youth group my sister was chaperoning, and a group of L.C.B.I. students.
While Kol was still in the hospital I drove home with the girls for a piano recital. On the way home, I had a flat tire. While I would rather not have had a flat tire, I couldn't have chosen a better place to have one. Sixty seconds earlier I was in the middle of a long line of vehicles, following the pilot truck, with piles of dirt on one side, big machines on the other, and nowhere to pull over. If it had been just a few minutes later, I would have been around a curve, and the construction workers that helped me wouldn't have seen me. I would have had to change the tire by myself, and we would probably have missed Julianna's piano recital.
Kol was given a toy light saber just before his radiation started. One stormy night, just after we arrived at Connie and Obert's for the night, the power went out. Kol's light saber gave us just enough light to help us find the candles, matches, and real flashlights.
The times that we were late leaving Outlook because of a last minute phone call, (or last minute potty runs or other typical chaos) were the times that we had virtually no wait for the pilot car on the highway. When there was more traffic through the city than we expected, we found good parking places at the Cancer Center. The times we couldn't find a decent parking spot was when there were 2 of us, so that one of us could get Kol to his appointment on time, and the other could find a parking spot (usually on the top level of the parkade).
When we couldn't take everyone to an appointment (or they didn't want to go), there was always someone available to stay with Birgitte and Mari, or take them somewhere. When we went shopping, there often seemed to be sales on the things that we needed. We got letters, or messages that said just what we needed to hear. When I needed a connection, someone would call me on the phone. We met people at the Cancer Center or hospital that had answers for the questions that were bothering me at the time. While we couldn't always get our pick of appointment times for the radiation, the times we absolutely had to have specific times (because of other appointments) were the times that it was easy to switch. Then there were the radiation therapists who did such a wonderful job of making the radiation treatments easier for Kol, re-arranged their schedule so that he could go to VBS.
When I was really starting to worry about what I would be doing this year for a homeschool curriculum, I got the results of the standardized tests Kolbjorn and Julianna did in June. That gave me the courage to decide to do something unconventional this year, and buy a fun science program instead of a more complete, traditional curriculum. We are all very excited to build our own remote controlled vehicles, hydrogen cell vehicles, hovercraft, kites, and alarm clocks.
This may sound strange, but even the timing of the discovery was great for several reasons. It was summer time, so there were lots of things for the girls to do to keep busy, and the bulk or the driving occurred in the summer. At 3.5 months, Annika was really at the perfect age to be 'hauled' around the hospital. She no longer a newborn, and we had gotten over most of the initial stresses of having a new baby around. She was still small enough that she couldn't roll over, so it was safe to lay her down on the bed when I needed to help Kol, and she was too young to want to play on the floor. Julianna had just started to babysit, and was very eager to help out, which has been a huge blessing, too.
There have been other, fun things, too, like the day we went out for lunch at Jerry's after an appointment, and it turned out to be the day they were giving away free samples of their new gelato and ice cream flavours. On the day we risked taking Kol to the library in spite of his low blood counts, the library was completely empty. In spite of the short notice, everything fell into place extremely well for Kol's birthday party.
We have come across many people that had connections to us - like the doctor who used to work at the plant Kirk's grandpa built, and whose brother went to L.C.B.I., and the nurse whose brother is married to Kirk's cousin. When we went to the zoo, we met someone who recognized me from L.C.B.I. I don't think she's seen me for 20 years, but she still knew my name. We met a family at the cancer center who didn't know who we were, but who had heard about Kol and had been been praying for him since his surgery.
I know that I feel much better when I look at what is working than when I start to ruminate on the uncertainties. We have lots to be thankful for. God is good. I see that when I start to look at the little things. We still don't have answers, many things are still uncertain, but life will go on, and we will thrive.
Sunday, November 14, 2010
Support
On Tuesday, Kristen and I (and Annika) drove in to Saskatoon to meet with the brain tumor support group. I remember noticing posters for the support group when Kol was still in the hospital after his diagnosis and surgery, and at the cancer clinic during his radiation treatments, but this was the first time we actually were able to attend.
I was nervous - I didn't know what to expect, and those of you who know me well know that I don't always enjoy new social situations. It helped that a friend of ours met us waiting for the elevator (she's an event planner and was attending the meeting to discuss upcoming fundraisers for the Brian Tumour Foundation). It also helped that within a few minutes of entering the meeting room, I was called upon to help figure out how to get a laptop connected to a projector and get various things (DVD, photo slide show) working on the laptop.
It really helped when the meeting started, and we got to hear the other members stories - of their own journeys with brain tumors, or for some, their journeys caring for someone with a brain tumor. We had a chance to share our story, and it felt good knowing that the people listening could understand a lot of what we have gone through. It was good to see people who are many years into their journey and still going strong.
One of the members talked excitedly about an alternative therapy that Kristen had recently read about. There were a large number of teachers (former and current) in the group. We also discovered that we were connected to several members via common acquaintances.
But what really cemented it for us was hearing one member comment "They were serving sugar [candy] to cancer patients! Are they crazy?" and seeing many others nod their head in agreement. It seems that whenever we mention to someone (even at the cancer center) that we've cut sugar out of Kol's diet, we get questions and the occasional funny look, but here? They understood! The potluck table also featured dishes made with lentils, quinoa, and organic ingredients.
The meeting ended at 9:15, but we stayed talking for half an hour afterwards. It was a good group to be with, good to know people who can really relate to what we are going through, and we are looking forward to the next meeting in December.
I was nervous - I didn't know what to expect, and those of you who know me well know that I don't always enjoy new social situations. It helped that a friend of ours met us waiting for the elevator (she's an event planner and was attending the meeting to discuss upcoming fundraisers for the Brian Tumour Foundation). It also helped that within a few minutes of entering the meeting room, I was called upon to help figure out how to get a laptop connected to a projector and get various things (DVD, photo slide show) working on the laptop.
It really helped when the meeting started, and we got to hear the other members stories - of their own journeys with brain tumors, or for some, their journeys caring for someone with a brain tumor. We had a chance to share our story, and it felt good knowing that the people listening could understand a lot of what we have gone through. It was good to see people who are many years into their journey and still going strong.
One of the members talked excitedly about an alternative therapy that Kristen had recently read about. There were a large number of teachers (former and current) in the group. We also discovered that we were connected to several members via common acquaintances.
But what really cemented it for us was hearing one member comment "They were serving sugar [candy] to cancer patients! Are they crazy?" and seeing many others nod their head in agreement. It seems that whenever we mention to someone (even at the cancer center) that we've cut sugar out of Kol's diet, we get questions and the occasional funny look, but here? They understood! The potluck table also featured dishes made with lentils, quinoa, and organic ingredients.
The meeting ended at 9:15, but we stayed talking for half an hour afterwards. It was a good group to be with, good to know people who can really relate to what we are going through, and we are looking forward to the next meeting in December.
Tuesday, November 9, 2010
We have a date!
We have a date for Kolbjorn's next MRI. It will be on December 21st. We were hoping that it would be in November, but it seems the MRI suite is busy, and since Kol is doing well, he can wait. He is scheduled to start his 4th cycle of chemo the next day, so we won't have to wait long for the results of the MRI this time.
Please pray that the results will be positive. Obviously, we'd love it if the tumour were completely gone.
Whatever happens, we know that Kolbjorn is in God's hands. He's shown us that over and over again since May 28th. When I first started reading about aggressive brain tumours, I read stories about kids that didn't make it through their treatment - in fact, I found that many children died between 5 and 6 months post diagnosis. My goal for Kol was to make it past that milestone, because I felt that if he made it that far, his odds would be much better. Five months and two days ago, we received the pathology results on the mass in Kol's brain. Kol is doing well now, and unless something suddenly goes horribly wrong, he will easily make it past that 6 month mark. God is Good. Thank-you for all of your prayers on our behalf up to now, and please don't stop. There is still an aggressive tumour in Kol's head, and given the chance, it could continue to grow.
Please pray that the results will be positive. Obviously, we'd love it if the tumour were completely gone.
Whatever happens, we know that Kolbjorn is in God's hands. He's shown us that over and over again since May 28th. When I first started reading about aggressive brain tumours, I read stories about kids that didn't make it through their treatment - in fact, I found that many children died between 5 and 6 months post diagnosis. My goal for Kol was to make it past that milestone, because I felt that if he made it that far, his odds would be much better. Five months and two days ago, we received the pathology results on the mass in Kol's brain. Kol is doing well now, and unless something suddenly goes horribly wrong, he will easily make it past that 6 month mark. God is Good. Thank-you for all of your prayers on our behalf up to now, and please don't stop. There is still an aggressive tumour in Kol's head, and given the chance, it could continue to grow.
Thursday, November 4, 2010
A cat and a dog and a mouse. Oh - and a piano guy.
I know I've talked about play practice before, but I don't think I've explained what is happening. Most of our family is involved in Equinox Theatre's latest production. It is a double feature of two children's plays: 101 Dalmations, and The Aristocats. Kolbjorn and Mari are both in 101 Dalmations, and Julianna is in The Aristocats. Kirk is the piano guy for 101 Dalmations. There will be four evening shows and a Sunday matinee, from November 17th to the 21st.
There have been practices twice a week since early September. Kolbjorn has missed a lot of practices, due to his house arrest, but he's been working hard at home, practicing his lines and his solo, and listening to the guide vocal track CD. The director and producer have been wonderful, allowing him to be in the play in spite of all of the missed practices. He is so excited about the play. It's great to have something for him to be excited about, and a goal for him work towards. He has Mari to help teach him the choreography and blocking, and Kirk to help him with the music. Birgitte has heard the CD so much that I think she knows the music better than Kol and Mari. Kol told me to say that he definitely disagrees with this statement, however, she is constantly singing Dalmations songs - usually at the top of her lungs. (Just a side comment about Birgitte - it's been wonderful to see the musical side of her personality again - she'd stopped singing and playing the piano while she was on the anti-epileptic medication.)
The plays were originally slated for the spring, and Kol and Mari had both auditioned then. The play was postponed to the fall, and then came Kol's surgery. In the days at the hospital after the surgery, we never imagined that Kol would be able to be in the play. It's wonderful - a miracle, really, that he has recovered well enough to be involved. Another cool thing - some would say co-incidence, although I chose to believe otherwise - is that the performance dates match perfectly with Kol's treatment schedule. His blood counts should be back in the normal range by the 11th, or 12th of November at the latest, just in time for the dress rehearsals. He will start another round of chemo (and more house arrest) on November 24th - 3 days after the last performance.
Tickets went on sale a week ago today, and I've heard that close to half the tickets are sold already. If you'd like to come see the kids as a cat, a dog and a mouse, we'd love to have a visit. You can contact The Outlook for tickets, or contact us, and we'll try to get tickets for you. Our contact info is accessible from the "Contact Us" link on the top left side of this page, or you can just click here.
There have been practices twice a week since early September. Kolbjorn has missed a lot of practices, due to his house arrest, but he's been working hard at home, practicing his lines and his solo, and listening to the guide vocal track CD. The director and producer have been wonderful, allowing him to be in the play in spite of all of the missed practices. He is so excited about the play. It's great to have something for him to be excited about, and a goal for him work towards. He has Mari to help teach him the choreography and blocking, and Kirk to help him with the music. Birgitte has heard the CD so much that I think she knows the music better than Kol and Mari. Kol told me to say that he definitely disagrees with this statement, however, she is constantly singing Dalmations songs - usually at the top of her lungs. (Just a side comment about Birgitte - it's been wonderful to see the musical side of her personality again - she'd stopped singing and playing the piano while she was on the anti-epileptic medication.)
The plays were originally slated for the spring, and Kol and Mari had both auditioned then. The play was postponed to the fall, and then came Kol's surgery. In the days at the hospital after the surgery, we never imagined that Kol would be able to be in the play. It's wonderful - a miracle, really, that he has recovered well enough to be involved. Another cool thing - some would say co-incidence, although I chose to believe otherwise - is that the performance dates match perfectly with Kol's treatment schedule. His blood counts should be back in the normal range by the 11th, or 12th of November at the latest, just in time for the dress rehearsals. He will start another round of chemo (and more house arrest) on November 24th - 3 days after the last performance.
Tickets went on sale a week ago today, and I've heard that close to half the tickets are sold already. If you'd like to come see the kids as a cat, a dog and a mouse, we'd love to have a visit. You can contact The Outlook for tickets, or contact us, and we'll try to get tickets for you. Our contact info is accessible from the "Contact Us" link on the top left side of this page, or you can just click here.
Tuesday, November 2, 2010
MRI results and more
Kirk and I were just re-reading some of the recent posts on the blog, and we realized that we haven't written about the results of the the MRI that Kol had on September 23rd.
According to the oncologist, there is still a mass, 1 cm in diameter, remaining in the fluid space in Kol's left ventricle. There is no way of telling if that is just what was left behind, or if it is growing, or if it is shrinking - at least according to the Dr. we talked to. We'll find out more after his next MRI at the end of November, or beginning December.
The neurosurgeon said that he removed about 90 - 95% of the tumour in the fluid space, and he also said that the tumour was originally about 4 cm in diameter. Kirk did the math, and what is left would be about 1 - 2% of the original tumour size - assuming that the tumours were perfect spheres, and that they were exactly 4 cm and 1 cm. This is encouraging to me, at least. I choose to believe at this point that it means that the tumour has not grown.
Kol had a few headaches again during the last 2 weeks before his second cycle of chemo started. They are most likely either caused by changes in the tumour size, causing his brain to adapt to the new pressure inside the brain or by gluten withdrawl (there'll be more about this in another post). These headaches are different than the ones he had before his surgery. These come on suddenly, are quite uncomfortable, but usually go away relatively quickly, too. Kol hasn't had to take any medication for these headaches yet, but he also has a very high tolerance for pain.
We were in Saskatoon for the day on October 20th, and Kol fell asleep on the way in to the city. When he woke up, he was sick. He was sick again later in the day - again after having napped in the car. Thankfully he has been well since, however, every recurrence of the tumour symptoms brings new questions and worries. Every new complaint causes concern about chemo side effects, a new growth, or some secondary infection. I wish others could understand. I hope none of you will.
I miss the days when a headache was just a headache, and vomiting was just caused by the latest 24 hour stomach bug that was going around town. I thought the worry would lessen over time, but in lots of ways, it has just intensified. We have Kol back - he survived long enough to have surgery, and recovered from that and the radiation. He is handling chemo well. For that, I am extremely thankful. In spite of all of this, or maybe because of it, I am really starting to realize that as long as Kolbjorn is alive, the worry will always be there. We need to learn to live with that constant worry, because it's much better than the alternative. I want to see Kol get married, be a father, live a productive life. As the song says, "heaven is a wonderful place" but I'm selfish enough to want Kol to experience what he can here on earth first. He has so much to learn - and so much to teach me.
According to the oncologist, there is still a mass, 1 cm in diameter, remaining in the fluid space in Kol's left ventricle. There is no way of telling if that is just what was left behind, or if it is growing, or if it is shrinking - at least according to the Dr. we talked to. We'll find out more after his next MRI at the end of November, or beginning December.
The neurosurgeon said that he removed about 90 - 95% of the tumour in the fluid space, and he also said that the tumour was originally about 4 cm in diameter. Kirk did the math, and what is left would be about 1 - 2% of the original tumour size - assuming that the tumours were perfect spheres, and that they were exactly 4 cm and 1 cm. This is encouraging to me, at least. I choose to believe at this point that it means that the tumour has not grown.
Kol had a few headaches again during the last 2 weeks before his second cycle of chemo started. They are most likely either caused by changes in the tumour size, causing his brain to adapt to the new pressure inside the brain or by gluten withdrawl (there'll be more about this in another post). These headaches are different than the ones he had before his surgery. These come on suddenly, are quite uncomfortable, but usually go away relatively quickly, too. Kol hasn't had to take any medication for these headaches yet, but he also has a very high tolerance for pain.
We were in Saskatoon for the day on October 20th, and Kol fell asleep on the way in to the city. When he woke up, he was sick. He was sick again later in the day - again after having napped in the car. Thankfully he has been well since, however, every recurrence of the tumour symptoms brings new questions and worries. Every new complaint causes concern about chemo side effects, a new growth, or some secondary infection. I wish others could understand. I hope none of you will.
I miss the days when a headache was just a headache, and vomiting was just caused by the latest 24 hour stomach bug that was going around town. I thought the worry would lessen over time, but in lots of ways, it has just intensified. We have Kol back - he survived long enough to have surgery, and recovered from that and the radiation. He is handling chemo well. For that, I am extremely thankful. In spite of all of this, or maybe because of it, I am really starting to realize that as long as Kolbjorn is alive, the worry will always be there. We need to learn to live with that constant worry, because it's much better than the alternative. I want to see Kol get married, be a father, live a productive life. As the song says, "heaven is a wonderful place" but I'm selfish enough to want Kol to experience what he can here on earth first. He has so much to learn - and so much to teach me.
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