Thursday, December 30, 2010
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
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
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
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
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.
Tuesday, December 21, 2010
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.
Friday, December 17, 2010
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
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.
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
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
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
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
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
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
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
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.
Saturday, October 30, 2010
It's been a while since we've posted; I'm sorry it's taken so long. I have started a couple of posts, but haven't gotten them polished enough to actually post them. I hope we're not losing readers because of the long silences - we really do appreciate all of you who read this blog, and who are keeping us in your thoughts and prayers. We also really appreciate all of the comments, letters, e-mails and support we receive from all of you. It helps us to know that we aren't alone, and that there are so many people who also care about Kol and our family.
We interrupt this post for a fun story . . .
Just now, as I started writing this, Kol told Mari that once his Cancer is over, he'll have 2 jobs - one as a sugar-free ice cream salesman, and the other will be as the first Cancer Doctor to invent a pill that people can take after radiation treatments, which will destroy the Cancer. The radiation (he says) will destroy the outside of the tumour - the part that is blocking, or protecting the part of the tumour that is susceptible to the pill. He also said that he wants to be the youngest Cancer Doctor that ever lived. He then told me that he wants to be a naturopathic doctor, too, but he wants to be able to have access to a place where they can do MRIs. I told him maybe he can figure out a way that he can combine the two. His face brightened at that idea, and then he said that he'd have to learn how to do lots of equations.
And now back to the planned message . . .
We just spent the last 2 days in Saskatoon at the Cancer Center, where Kol got his 3rd and 4th doses of Cyclophosphamide (cyclo for short)- the chemo drug that he's been getting on the maintenance cycle. Kirk has a post planned that will explain the treatment process in more detail, so I'll leave that to him. We are back at home, and Kol is doing surprisingly well. Last time, after the 2 days of cyclo, Kol was tired, and we expected this time to be worse - but he was feeling good enough to go to his play practise last night, and, aside from looking pale, he seems fine today.
The cyclo damages the bone marrow, which produces white blood cells, which in turn fight infection. White blood cells live approximately 5 days, so Kol's white blood cell counts will drop steadily over the next few days as the oldest cells die off, and as his body isn't able to produce new white cells. They reach the lowest levels around days 7-10, and then should start to recover again. Last time, Kol's counts were up in the safe range by day 14, so we hope it'll be about the same this time. Today, we start giving Kol sub-cutaneous (just under the skin - not into the blood stream) injections of G-CSF, or filgrastim, which helps stimulate the white blood cell growth. He will get daily injections for a minimum of 7 days, or until his counts are high enough again. He got 12 doses last month. At the Cancer Center, Kol had something called an encephlon inserted in his arm, near his PICC line. The G-CSF is injected into that, so he doesn't need to get poked every time he gets it. We call the encephlon a mini-PICC. The bad thing is that the encephlon only lasts a week, so he'll need a new one next week. Two pokes are still better than 12.
We'll be starting another round of "house arrest" for Kol in the next couple of days. It's a good thing that Kol is such a home body - he doesn't really miss not being able to go out too much - although I think he does miss Sunday School and play practise.
kol says he does not miss SS and play practise!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mom dis is kol typing!
I guess I should learn not to leave my computer unattended, and unlocked. I stand corrected.
The more I learn about the amount of abuse our bodies can withstand, the more amazed I am at the way God created us. Doctors can't heal us - our own bodies do that. We humans still don't understand all of the processes involved in life, health, or healing - but God does. How cool is that?
Thursday, October 14, 2010
- Kol recovering from chemo:
- Kol has been under virtual "house arrest" the past two weeks, as his immune system took a big hit from the chemotherapy. Fortunately, his blood counts are back up again (as of Wednesday morning), so he'll be able to get out of the house again - go to rehearsal for "101 Dalmations", church, shopping, etc. Other than that, he's weathered this first round of chemo pretty well. Provided that his immune system continues to recover, he's scheduled to start the next round at the end of October.
- Birgitte's journey:
- Sometimes it feels like we could start a second blog to talk about Birgitte's issues. We've finally gotten her weaned off the clobazam, and in the last week we've seen a lot more of the "old Birgitte" - her eyes seem brighter, she laughs more naturally, she's been less impulsive, she's listening better, she's started reading again. She's still not totally back to her old self, but there is definite improvement. She's completely off any medication at the moment, and will likely stay off for at least a few more weeks before we consider trying a different drug. There is a higher risk of her having seizures, but we're relatively comfortable with that risk for now - it's been so encouraging to see her old personality start to return.
- This old house:
- I don't know if we've mentioned this much on the blog, but we've been in the middle of renovations and repairs in our basement most of this year - actually, the renovations have been ongoing for many years, but we had flooding in our basement just before Christmas that set us back a ways. The end is finally in sight for the lowest level - the electrical work is finally done, the flooring is coming together, the drywall should be done soon, and with any luck we'll have the two oldest girls moved down to their new bedroom before the end of the month - nearly a year behind schedule, but better late than never! Once the basement is done, we'll start working on the next level up - we're hoping to put in a reading/homeschool room, a new office (so the current office can be turned back into a bedroom), and better storage space. We're really looking forward to being able to live in our whole house, not just the top half!
- Family matters:
- Our family has been through a lot of change and stress this year, with Kolbjorn's diagnosis and Birgitte's medication-induced personality changes and behavior problems, with the new baby (who just turned 8 months old, where did the time go?), with crazy travel schedules, with all the kids homeschooling, with us all crammed together in half of our house... The cracks are beginning to show. There are lots of short tempers, lots of easily hurt feelings, trouble falling asleep and trouble getting out of bed, lack of motivation, focus, and energy. The fact that we're aware of what is happening is a good first step, but we're not exactly sure what the next step should be - family counseling perhaps? I'm sure that our kids are at least as worried and scared as Kristen and I are about all that has happened, and all that might happen - we need to find a way to work through this all so that it doesn't poison our family relationships. We're just not sure where to start looking for help - any suggestions would be welcome (in the comments, or email Kristen if you don't want to share publicly).
- For Kolbjorn's continued healing, and for him to tolerate the next rounds of chemotherapy well
- For Birgitte's continued healing, that she doesn't have any seizures while she is off medication, and that we will be able to find something that works without adverse side effects
- For our family's emotional well-being, that we can all find healthy ways to work through our fears and worries
- For the completion of our basement renovations!
Thanks again for all your support and encouragement, and hopefully we'll get back to posting more frequently!
Friday, October 1, 2010
We're still going to have to keep a close eye on his blood counts, especially his white blood cells. As Kristen mentioned in the last post, this chemo drug is going to have a significant impact on his bone marrow, so he'll probably be house-bound for the next few days until we know that his immune system is healthy enough to be out and about. It looks like he'll be getting blood samples taken three or four times over the next three weeks, so we should be able to stay on top of things there. Hopefully we won't have to deal with too much "cabin fever"!
We get to stay home now until next Wednesday, when he goes back to the cancer center for a dose of vincristine (the "milder" chemo drug). There are some other things he needs before then (daily doses of a drug to help rebuild his bone marrow, blood tests), but those are all things that we can either do ourselves, or else get done at the health center here in Outlook.
Thanks again for all your prayers and encouragement!
Tuesday, September 28, 2010
Kol had an MRI on Thursday, the 23rd. He did an awesome job - he was scheduled during a time when they don't have an anesthesiologist in the MRI suite, so we were a bit worried that he would be scared, and that they'd have to stop the MRI. They have special goggles and earphones for kids, so they can watch a movie during the procedure. Kol got to bring a favorite movie along, so he chose Star Wars. Big surprise. :-) He did great - and was very proud of himself for not moving. The MRI staff were impressed, too - at least that's what they said. Maybe they were being polite.
This MRI will be the first picture of the tumour since just after the surgery. There will still be lots of swelling because it takes a long time for dead cells to be removed from the brain so this MRI will only give the Doctors a partial idea of what is happening in Kol's brain. There will be another MRI at the end of November, and the two MRIs combined will provide more information about what is happening with the tumour. We'll find out the results when we meet with the oncologist on Wednesday.
Kol starts his first round of what they call Maintenance Chemotherapy this Wednesday. There will be six 28 day cycles in total. Wednesday (September 29) will be day 0, Thursday will be day 1, and then day 28 becomes day one for the 2nd cycle. On days 0 and 1, Kol needs to be at the Cancer Center from 8:00 until 4:30. He will get IV fluids, the chemotherapy drug, and another drug that will protect his GI tract from the chemo drug on both days. It can cause internal bleeding if the other drug is not given. Fun stuff. It is also very damaging to the bone marrow, so we will most likely be on 'lock down' for a while again while his blood counts are low. We can go home again on Thursday night, until day 7 (the following Wednesday), when Kol gets another dose of the chemo drug he got while having radiation. He will have occasional blood work done between day 2 and day 28, and we will have to give him daily injections of a drug which is supposed stimulate the bone marrow while we are at home - or we could take him to the medical clinic here to get it done, if we need to.
Kol will be getting potent drugs - poisons, really, which we hope will kill the cancer before it hurts him too much. We really covet your prayers again. Please pray that:
- Kol weathers the chemo well
- that he won't suffer the more serious side effects of the drug - especially the long-term ones
- for Kirk, me, and the girls in our roles as supporters and watchers
- for family dynamics and strengthened relationships
- that we will soon get to see the real Birgitte again as her medication is reduced
- that we will be able to make good decisions
- for healing
Thank-you for your prayers and for all of the support you have given us in so many ways.
Monday, September 27, 2010
The stormtrooper piñata didn't work out as well as we had planned - the glue gave way after only a few hits. The kids still had fun scrambling for all the toys, though, and in a way it was a blessing that it broke when it did - it would have taken forever to give 50+ kids all a chance to hit it.
In the time between the cake and the piñata, we set up a bunch of activities and games for the kids, including LEGO building contests, Star Wars coloring sheets and papercraft, and "Pin the X-Wing on the Death Star".
It was a very memorable occasion. Thank you to everyone who was part of it!
Monday, September 20, 2010
The party is Saturday September 25th from 2:30 to 4:30 at Bethlehem Lutheran Church in Outlook. Please consider this your invitation to come and join us - there will be games and activities for the younger folk, and fellowship (that's Lutheran-ese for "coffee and treats", for those not in the know) for the rest of us. Kol wants a Star Wars theme to the party (at least the kids part of it), so if you want to dress up as a Star Wars character, go for it - and if not, that's just fine too. Gifts are unnecessary - if you feel compelled to part with some money on this occasion, there are a number of charities that could use it more than Toys 'R' Us (see the bottom of this post for our suggested charities).
To hear this information presented in a much more rambling fashion, please watch the video below (with apologies for poor video and sound quality again). See you at the party!
- Preston's Road Race: supports families dealing with childhood illnesses, in memory of Estevan's Preston Meyer who died at age 10 from cancer. An annual walk/run is held as a major fundraiser. (Contact information will be posted shortly)
- Canadian Cancer Society: www.cancer.ca
- Children's Hospital Foundation of Saskatchewan: www.childrenshospitalfoundation.sk.ca
- Children's Wish Foundation: www.childrenswish.ca
Tuesday, September 14, 2010
One of my last posts was about blessings. So is this one - about blessings in the form of lessons learned, prayers answered, gifts/kindnesses received, and more.
I'm a softie. I've always cried easily. I cry at movies and even at tender moments on a T.V. sitcom. I don't read "Chicken Soup" books because I can't see the print through my tears. I always cry when talking about things that are important to me. Yet, throughout Kol's journey, I have mostly been quite composed - especially when dealing with doctors and nurses. I'm normally too shy to ask many questions, or to push for a straight answer when someone is giving a round-a-bout reply. Since we first took Kol to the ER, I've been calm, and have been able to ask all the questions I need to ask. I've asked for more details, demanded straight answers, and pushed for more information. That is not me. I'm not normally that strong (or pushy?). I know that is an answer to prayer.
While Kol was getting his radiation treatments, we talked with others who have had radiation, and with others in the waiting room at the cancer center, who had, or who have radiation burns. Kol never burned. The skin on his head is discoloured - it kind of looks like a tan, except that it is blotchy. We also expected him to be really tired, and we were told that the earlier symptoms of the tumour (headaches) would come back during the treatments as the tumour died. Kol was not overly tired, nor did he have bad headaches. He only had 2 headaches throughout the entire time - and one went away with Tylenol, and the other was gone before he got the Tylenol. This is another prayer answered.
When Kol finished his last radiation treatment, we celebrated, relieved that another phase was complete. We had planned to go to the lake that day, but decided to take our time, rather than rush around. That was a good thing. On Tuesday night, I crashed. Everything finally hit me. I was suddenly exhausted and very emotional. I felt blindsided, and overwhelmed. Someone told me that grief and understanding comes in waves, when we're ready to deal with more, we get hit with the next wave. I know God gave me the strength to get through the treatment time, and then, when I no longer needed to be strong, I could finally experience another wave of grief and emotions. I didn't realize until that Tuesday evening how much I was being carried by prayer.
Gifts and Giving
I said before that I've never been good at accepting help, asking for help, or even at admitting that I need help, and neither is Kirk.
Over the last few months, we've been on the receiving end of countless kindnesses. It's been hard to accept the help, but it's been wonderful knowing that there are so many people wanting to do what they can to help make this road easier for us. Often I've wanted to help others when they've been struggling, but I haven't known what to do, so I've just put their names on my prayer list, and done nothing outward. I have often wanted to do more, but haven't because I didn't want to do the wrong thing, and offend. From being on the receiving end, I now feel that, if something comes from the heart, then it doesn't matter what I do. Even the tiniest things have meant a lot to us. Thank-you.
It's just over 3 and a half months since we took Kolbjorn to the E.R. but in many ways it feels like a lifetime. In many ways, I'm no longer the same person I was before. Things that I thought were important before mean very little now. I have different priorities, and I have learned a lot about how I deal with crisis. I want to share some of the insights we've had through all of this so far, in the hope that in some way, we can help you like we've been helped. It's too bad that it often takes a crisis to force us to act on what we already know in our heads is the right thing to do. I think Kirk and I are more stubborn than the average person. We must be, if it takes what we've been through to make us change.
I wouldn't wish that anyone else goes through what we have gone through this summer. However, I wish that everyone could learn some of the things that we've learned. These are all things that we all 'know' already, but which have become much clearer to me now.
Some things that are more important:
- Baby smiles. It has been wonderful having Annika with us. Her presence has been reassuring, and her smiles, giggles, and even diaper changes have been welcome distractions. Hugging a baby is great therapy.
- Just being together. Doing nothing. I realized at the lake after Kol's radiation finished how hard it is for me to just be present with the kids. I felt guilty for just sitting still and doing nothing but being with the kids. I kept thinking I needed to do something - like clean up, or read some more, or put photos into albums.
- Growing/learning/making the most of opportunities. This could mean going with the flow, allowing myself to not always be in control; loosening up - not being so concerned with what others might think. It means not doing things the way society (or the neighbour, or whoever) tells me I should - but the way I believe I should do them. It means being authentic.
- Allowing the kids the freedom to experience new things that we can't provide for them. Maybe it's my exaggerated sense of self-importance, but I have felt that it's my responsibility to care for my kids and that I was being negligent by allowing others to do my job. This summer, I wasn't able to do much for the big girls. Kol was pretty much house bound, which meant that so were either Kirk or I. I couldn't have done much with the girls. Instead, they got lots of opportunities to travel, be with relatives and friends on their own, without us. They grew and learned things that they couldn't have learned if we had kept them with us.
- Memories - I have often chosen family activities with the goal of creating memories for the kids. We have taken lots of pictures, but the pictures were in a big bin, waiting to go into scrapbooks. While walking through Costco with mom a few weeks ago, I saw photo albums on sale, and it suddenly hit me that having the pictures/memories accessible was more important than fancy scrapbooks, so I've spent most of my spare time recently putting the photos in albums. I started with pictures from just before Kol was born in 2002, and, after filling 6.5 albums (with approximately 1800 pictures) I have finally reached pictures from Birgitte's first birthday in the summer of 2006. We have an average of 2000 digital pictures per year, starting in January 2007, which I now need to weed through and make accessable. I love watching the kids re-live the memories when they page through the books.
We have been given a gift in that we didn't lose Kol, and we were reminded how important he and the rest of our children are to us. While Kolbjorn was in the hospital, Kirk and I were forced to examine what we would do differently as parents if we knew one of our children were going to die - or at least come close to dying. We talked about what we were thankful we had done. I was surprised that there weren't too many thngs we would have changed. We can't live in fear - we have to keep going, pray first, and trust that we are doing what is best for us all now. Life goes on. Kol is with us, taking piano lessons, doing science experiments and trying to sneak in extra 'screen' time. We have the opportunity to make some changes and do some of those things which we wished we had done. We've gotten Kol back - for how long, we don't know - but for this extra time, we will be forever thankful.
Whenever I start to become overwhelmed, there is one song that keeps coming back to me. I don't know why - but I believe that it's because God is doing great things through Kol's illness, that He will continue to do great things in Kol's life, and for those things, we must remember to give God the glory. It has, in many ways, become my 'theme song'. I've shared it before, but I'm going to post it again today.
To God be the glory
If you'd like to hear the tune, go here. It's not the best recording, but it reminds me of the way I always heard it growing up.
To God be the glory, great things He has done;
So loved He the world that He gave us His Son,
Who yielded His life an atonement for sin,
And opened the life gate that all may go in.
RefrainPraise the Lord, praise the Lord,
Let the earth hear His voice!
Praise the Lord, praise the Lord,
Let the people rejoice!
O come to the Father, through Jesus the Son,
And give Him the glory, great things He has done.O perfect redemption, the purchase of blood,
To every believer the promise of God;
The vilest offender who truly believes,
That moment from Jesus a pardon receives.
And here are the lyrics in Norwegian - just because I think it's cool that I came across them accidentally while I was searching for the lyrics to copy and paste (I'm too lazy to type them all out) - and because I know there are several people who are reading this blog who can understand them. They are actually quite close to the English version.Great things He has taught us, great things He has done,
And great our rejoicing through Jesus the Son;
But purer, and higher, and greater will be
Our wonder, our transport, when Jesus we see.
Vår Gud vere æra, for han vann oss von!
Så elska Gud verda: Han gav oss sin son.
Ja oss gav han livet, vart soning for synd.
Han Himmelen opna så kvar kan gå inn.
KorLova Gud! Lova Gud!
Heile verda høyr han!
Lova Gud! Lova Gud!
Alle gleda seg kan!
Å, kom til Gud Fader i Jesus, Guds son,
og gjev han all æra, for han gav oss von!
Å, fullkomen frelse: Kjøpt fri med hans blod,
er kvar den som trur, høyr Guds lovnad så god!
Den uslaste syndar som ærleg han trur,
får tilgjeving når han til Jesus seg snur.
Han storverk har synt oss, han storverk har gjort.
I Sonen, i Jesus, me gleder oss stort.
Men betre og større vert gleda vår når
me undrande reisa til Frelsaren får!
Sunday, September 5, 2010
Birgitte's fever has been much lower yesterday, and today, so that's been wonderful. She is still having strange symptoms, some of which can be attributed to the anti-epileptic drug, and some of which are as of yet unexplained. At least we have some answers now.
Birgitte didn't like the needles for the blood tests she had. She and Kol now have something in common that they can both compain about. It was neat seeing how she had more understanding for what Kol's been going through, now that she had a glimpse of it herself.
Friday, September 3, 2010
Now that Kol is better, we've been much more worried about Birgitte. We've mentioned that we're concerned about side-effects of her anti-epileptic drug (AED) before. They are getting worse - and some of the things she's experiencing don't seem to fit in with the known side-effects of the medication. In addition to that, the mysterious fever she had at the beginning of August, which kept her from the Friggstad family reunion, is back. It started Saturday, and lasted until about 2:00am early Wednesday morning. She had an appointment with the neurologist on Wednesday (which I nearly forgot about - but that's another story,) and she had no fever then. It came back about an hour after the appointment was over. It was gone this morning, too, but at around 2:00pm, it came back. I took her in to the clinic here this afternoon, and they again found no obvious cause - but the doctor is starting to do some more in depth investigation. We have blood work and some X-rays scheduled for tomorrow.
The neurologist also ordered a couple of blood tests, to try to determine what is causing some of the symptoms that we thought were side-effects of the medication, but which are actually not normally seen with this medication. It is possible that there is something else causing some of Birgitte's symptoms - such as an auto-immune disorder. The side-effects of the medication should be temporary, but if there is no change in another week, the neurologist will reduce the dose of the AED. I was impressed with that - last time we saw her, she said tht Birgitte was already on a low dose, and that medication was "all or nothing". Maybe she suspected we'd be tempted to go with nothing. It is becoming a more and more appealing option. Before suggesting that we try a lower dose, she told us about her 3 other options for medication. One can cause sudden, fatal liver damage in the first 6 months of use. Another one can cause psychosis and violence. The 3rd causes a serious full-body rash if increased too quickly. Even though these are all rare side-effects of the medications, they still worry us. The drug she's on now supposedly has the fewest and mildest side-effects.
At this point, all we can do is pray and hope that everything is temporary, and that it can be dealt with quickly so that Birgitte can get back to her sweet, charming, healthy self. Kirk joked that if this keeps up, we might have to start a "Birgitte's Journey" blog so she doesn't steal Kol's limelight.
Saturday, August 28, 2010
I've never been good at accepting help, asking for help, or even at admitting that I need help. Neither is Kirk. In school, I would much rather spend hours trying to figure something out on my own than ask for help from the teacher, and admit that I didn't know everything. For many years, Kirk would do everything he could to avoid calling tech support when he had a problem with his computers. Over the last few months, we've been on the receiving end of countless kindnesses, gifts, hugs, cards, letters, and more. It's been hard to accept the help, but it's been wonderful knowing that there are so many people wanting to help, reading the blog, praying, and using their talents to help make this road lighter for us. It's been reassuring to us - as well as humbling and overwhelming.
When I was little, I often made my dad tell stories about growing up during the 1930's. I loved hearing about his life and the way people lived in the 'olden days' - before electricity, cars, phones, fridges. I especially loved the concept of 'barn raising' type activities where entire communities come together to work on a project and help each other out. Not only does a big job get done quickly, but the community is strengthened, and the workers get to experience the pride and satisfaction that comes from working together. That kind of thing doesn't happen as regularly now, but it's cool that we got to see some of that spirit last week. It's humbling to be on the receiving end of it.
Just before I left for Saskatoon on the day we got the pathology report, I ran to get something out of our laundry room and saw water dripping down from the ceiling. The kids were finally loaded into the van (which we'd had to wait for while the tires were being replaced due to the flat tire the day before), and we really needed to get to Saskatoon to be together. Instead of delaying our trip, I called my brother. He found that our shingles, which we thought would last another 2 or 3 years, were shot as a result of the extrordinarily rainy (and windy) spring we had.
Then, my wonderful brother gathered together a group of amazing volunteers to re-shingle our house for us. Words can not express how thankful we are to these people for all the work they put in. They got the whole house finished in one day - just last Saturday, August 21. We weren't here to see them, but we do have pictures. There were some who worked on the roof, some who loaned the equipment, and some who made lunch, snacks and coffee for the workers. Thank-you to everyone.
We hope that you were all blessed through doing, and we pray that we will be able to pay it forward (or back) sometime soon.
Monday, August 23, 2010
We had a great few days at the lake. I wasn't sure I wanted to go, but we promised the girls we would be there to pick them up from camp. It turned out to be a much needed break. The girls did an awesome job in the musical they learned at skills camp and it was great getting to see friends from the lake again. Kol had a blast seeing his 'best friends' and all of the counselors from last year. We got to go tubing (my arms are still a bit stiff), and Mari even tried to water ski. I realized how hard it is for me to just sit and do nothing but be with the kids. I felt guilty just sitting - I kept thinking that I should go find something to do - like read one of the books we've been given, clean the kitchen, or write a blog post. It was a good lesson to learn.
Tomorrow Birgitte has a follow-up EEG, so some of us will be making another trip to Saskatoon for that, but then we have no more medical appointments scheduled until Kol's MRI on September 23rd. It will be nice to be able to spend a large chunk of time being normal. Normal is good.
Birgitte seems to be tolerating her medication well, but we have noticed several behavioural changes in the last few weeks that we're not happy about. It's hard to tell if they are due to all the changes, travelling, and upheaval throughout Kol's treatment, or if it is due to side-effects of her medication. I hope we can figure it out soon, though. I miss Birgitte.
I'm working on another blog post, which should be finished soon. I was hoping to get it done today - but I'm going to go spend time with the kids, so it won't be. It's also getting really long; I have so much to say. It's about Blessings.
Tuesday, August 17, 2010
Kol went out with a bang today. Kristen had asked the radiation therapists on Monday if we could bring in a few balloons to celebrate Kol’s last radiation treatment. They decided to take charge of the celebrations themselves.
Today, when they came to get us from the waiting room, one of them was dressed up in a black cape and Darth Vader mask:
Kol arrived at the radiation therapy suite to find more of them with various Star Wars accessories, including blasters and clone trooper helmets.
While Kol was in treatment, they set up a balloon drop and handed out noisemakers, and when he came out of the treatment area, they let them drop:
After celebrating (with a CD blasting “We Will Rock You” and “Taking Care of Business”), all that was left was for Kol to ring the bell:
For those not in the know, this is a tradition in the radiation therapy department – there’s a bell mounted on a plaque in the hallway by the waiting room, and when someone has their last radiation treatment, they ring the bell, and everyone applauds.
Thanks so much again to the “Meadow” team for taking such good care of not only Kol, but all of us.
The rest of the day was filled with fun – we went out for lunch, gave Kol some new LEGO, went out for a movie, and then ordered pizza for supper.
The future is still uncertain, and this is only a short break – we’ll be back at the cancer center in about five weeks to start a more intense chemotherapy regimen (that will last for about six months), with a follow-up MRI in late September. But all of that can wait – for now, it’s time to relax, head up to the lake for a bit, and just enjoy a quiet time together.
This was a good day.
Monday, August 16, 2010
Sunday, August 15, 2010
It's just five of us this week - Julianna and Mari are both gone to Kinasao for Skills Camp, so we won't see them until Friday afternoon. We're thinking of heading up to the lake on Tuesday or Wednesday and stay at Mom and Dad's cabin for a bit, or we might just run up Friday afternoon to get the girls - either way, we'll at least get to say that we went to the lake this week.
Kol continues to be in good spirits and dealing well with the treatments. His blood counts on Wednesday were back up in the safe zone, so he was able to go to VBS on Thursday and Friday morning in Outlook - he had a blast, it was so good to see him up singing with the other kids at the closing gathering Friday.
The meeting with Birgitte's neurologist went well last week - as expected, there was nothing out of the ordinary in her MRI. The neurologist said that her personality changes could be a side-effect of her medication, but they might just be temporary while she's adjusting to it. There's another EEG scheduled for her later this month, which should give an indication as to whether the medication is helping.
So, a somewhat busy week coming up, but then things might actually have a chance to settle back into some sort of normal, at least for six weeks. Kol is supposed to get an MRI about a month after the end of radiation treatment - mostly to check on the swelling, etc. from the radiation - and then another MRI two months after that to get a better look at the tumor. Chemotherapy should start sometime around Kol's 8th birthday (September 27th).
Thanks again for all of your prayer and support, and thanks for all the positive feedback from the video post last week - we'll see about doing something like that again in the future, it was a lot of fun!
Sunday, August 8, 2010
- The number seven has always a certain mystique about it - seven days of creation, the seven wonders of the ancient world, seven seals, seven dwarfs. This weekend we've realized that our seven-year-old son, from our family of seven, has only seven radiation treatments left. It's hard to believe we're this close to the end of this phase of treatment - we're really looking forward to it being over.
Kol continues to do well - he has had only a few short-term side-effects from the treatments (nausea, hair loss, lowered blood counts) that are either easily treated or tolerated. There are still long-term effects that we won't see for quite a while, but for now, he is such a trooper, and we are proud and thankful.
- This past week saw me (Kirk) on the road a lot - to Buchanan and back on Monday for a classmate's funeral, to Cypress Hills on Tuesday with Julianna and Mari for the Friggstad family reunion, back to Saskatoon Wednesday evening for appointments Thursday morning, and then back to Outlook Friday evening. Julianna and Mari stayed on in Cypress with my dad until Thursday, then went to Regina to visit their cousins (especially newborn Kjell!), finally returning home Saturday night. This coming week promises to have less of a "road warrior" schedule - we're in Saskatoon until Wednesday, then we'll drive in for Kol's appointments Thursday and Friday afternoons so that he can spend at least a couple days at VBS in Outlook (if his blood counts are high enough). Julianna and Mari are staying in Outlook and going to VBS all week.
- Speaking of blood counts, Kol's counts were on a roller coaster ride again last week. Tuesday, they were high enough that they were able to resume the final two spinal radiation treatments, but by the end of those treatments they were so low that we had to keep Kol at home all weekend to reduce his exposure to possible infections. Now that the spinal treatments are all done, the blood counts should start rising again - and Kol doesn't have to have daily bloodwork done any more.
- Birgitte didn't come along to the Friggstad reunion last week - she started running a fever the Saturday before the reunion (July 31), and it still hadn't broken by Tuesday morning, so she went to Saskatoon with Kristen, Kol, and Annika. Sandra (Kristen's mom) also came along to Saskatoon, so she was able to take care of Birgitte while Kristen took Kol to his appointments. Fortunately, Tylenol kept the fever under control until it finally broke on Wednesday.
This Monday morning (August 9) is Birgitte's follow-up appointment with her neurologist. We'll likely hear if anything of interest showed up in her recent MRI scan, and we want to talk about the side effects of her medication - this past week, we've really noticed changes in her personality and behavior that seemed to coincide with an increase in her dosage last Sunday. Hopefully we can find out if there's anything that can be done, if these effects are temporary, or if there's more going on than meets the eye.
- Our 16th wedding anniversary was last Friday, so we went out for supper Thursday night at Moxies. Sandra was still with us in Saskatoon, so she watched Kol and Birgitte for us - Annika hasn't started any solids yet, so she had to stay with Kristen. It was good to get a little time together without most of the kids. :-)
- BONUS VIDEO!
- Kol and I were alone at home Sunday afternoon (Kristen and the girls were gone swimming), so we started playing around with the webcam. It's not a professional production by any stretch of the imagination - the microphone didn't always pick up Kol's voice, the lighting isn't great, and there are a few seconds at the beginning where I stare blankly at the camera until I realize that it's recording - but we had fun recording it, and we hope you enjoy it:
Tusen takk for bønnene deres og støtte - thank you very much for your prayers and support.
Friday, July 30, 2010
It's been the same with Kol's treatment. There have been more delays than we expected, and detours from the plan. It's a very good thing that these treatments are happening in the summer when we've had the freedom to be flexible, and keep the whole family together, while we focus on getting Kol better. It feels like a full-time job. I have no clue how people can care for a child with cancer with both parents trying to continue to work (full-time or part-time), and juggling school and other activities for the rest of the family - especially if they have to travel for treatment.
The latest bump in the road is Kol's white blood counts. They were low last week, and have been slow to recover. They had recovered enough by Wednesday so that the radiation oncologist decided that it was time to continue with the craniospinal radiation treatment - which is treatment to both the head and the spine, instead of the 'boost' treatment to just the tumour area. The plan was to finish the 3 craniospinal treatments before the long weekend, giving Kol's body 3 days over the weekend to recover. However, on Thursday, Kol's white blood count was lower than it has ever been, which meant that they had to return to the boost treatments for both yesterday (Thursday) and today. That also means that there are still 2 more craniospinal treatments to finish off sometime in the next 3 weeks. The bonus is that Kol didn't need to go in for blood work this morning - just the radiation treatment.
The staff at the Cancer Center have all been very helpful and friendly and are all very capable and willing to answering questions, but if I had one complaint, it's that they aren't the best at being pro-active. I would have loved an explanation or a handout at the start of radiation that gave a more specific overview of when to expect certain side-effects (like many patients start to lose their hair after 10-15 treatments to the head), what to expect if certain common side-effects occur (like needing to come in early for daily bloodwork in the event of low blood counts), and what to do to alleviate problems if you experience them (like use Glaxo Base lotion for itchiness, or pure aloe gel for redness/burning). It would be even better if it came with all the the sample packages they gave us. The radiation therapists know when to watch for certain side-effects, so why not share that knowledge with us? I know not everyone experiences the same side effects, and not at the same time, and patients are all receiving treatments to different parts of the body, so I guess it may be impractical. It would still be nice to have a bit of a 'heads up' though. It's good that we've had the freedom to be flexible.