It's party time!

In the early dark days of Kolbjorn's diagnosis, there were times that we wondered if he would live to see his next birthday. What a long way we've come from there! Kol's birthday is just about here, and so we're throwing a great big party - to celebrate his 8th birthday, and to say thank-you to everyone who has kept Kol and our family in their prayers, encouraged and uplifted us, and supported us in so many ways over the past four months. In Kol's words, it's a "birthday slash thank-you slash anyone-can-come party". Consider this your official invitation.

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!



Suggested charities:

• 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

Blessings Part 2

(I apologize for making you all wait so long for another post.  I've been working on this one for a few weeks.  It's finally done.  Enjoy.)

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.

Answered Prayer

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. 

Lessons Learned

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.  

Relationships

Now, while all of the things above have more significance in my life, there are other things that tower above all of them. Those things are relationships.  Relationships with God, with each other, with our extended family, and with friends.  If you read through the list above again, most of the items on that list have to do with relationships, too.  This might sound strange coming from me.  I'm an introvert and a  homebody.  I like solitude, and I'm certainly not a social butterfly.  However, I value all of my relationships much more now - and in the last few weeks, have started putting more energy into nurturing relationships.  I find myself thinking about how I can improve my relationships with my children, with Kirk, with family and friends, and with people I have always wanted to get to know better but have been too shy to reach out to.  I almost crave connections - and I mean meaningful connections - face-to-face, or at least voice-to-voice connections, where I can hear nuances, warmth, and get immediate feedback.  Where we can share thoughts, theories and ideas, have in-depth discussions, share real emotions, and even discuss differing opinions.  While e-mail certainly has it's place and I won't stop using it, I've started to realize how much it has robbed me of these true, meaningful connections.

Time

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.

Reassurance

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.

Refrain

Praise 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.

Refrain

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.

Refrain

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.

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.

Kor

Lova 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.

Kor

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!

Kor

Some answers

Birgitte's mysterious fever isn't quite so mysterious this time.  The tests she had done on Friday showed that she has a bladder infection.  Because it's not her first bladder infection, the Dr. wants to look into doing some follow-up tests to see what might be causing these infections.  We have another appointment for that on Tuesday.  So much for the month with no medical appointments. 

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.

One at a time

Kolbjorn is doing very well now.  He handled the radiation much better than we expected - his skin didn't burn, he didn't get exceptionally tired, nor did his headaches return.  He's starting to gain some weight, his appetite is better, he's only had a couple of mild headaches, and he's not sleeping more than normal.  Aside from his hair style, and some strange coloration on his head (it looks tanned, but only in a few areas, and some of the tanned skin is peeling) there is no way to tell what he's been through.  He looks and acts like a normal kid. 

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.
  

Blessings

We have been blessed in so many ways since the end of May.

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.

It's wonderful to be home

We are at home.  All seven of us are together, in our house, at the same time.  And we get to stay here for more than just a day or two.  We get to sleep in our own beds, eat our own food, clean up after ourselves, and do our own laundry.  It's wonderful.  It's ordinary.  It is truly a gift.  Even the arguing and tears as we deal with pent-up emotions are wonderful.  I can breathe again.

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.

And then there were none!

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.

And then there was one...

We met with the radiation oncologist today, and he asked Kol how he felt about having only one radiation treatment left. Kol responded "Good, but... it's going to be hard to say goodbye." I think that speaks volumes about the radiation therapists at the Saskatoon Cancer Center - they have been so easy to work with, so supportive and so caring over these past six weeks. I agree with Kol - it is going to be hard to say goodbye.

And then there were two...

Two radiation treatments left. It's hard to believe that we're so close to the end of this phase of treatment. We're not sure what we're going to do to celebrate after the last one (on Tuesday), but as long as Kol is feeling up to it, we'll find something fun to do.

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!

Infodump

It's been over a week since we last updated the blog - here's what was, what is, and what may come:

Seven:

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.

Travel:

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.

Counts:

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:

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.

Anniversary:

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.