Tuesday, September 28, 2010

The holiday is over

I have never liked the way I feel at the end of a break.  This ending is worse than most.  It's been wonderful being at home, getting back into a routine, being normal.  Aside from his lack of hair, no one would guess that Kol is sick.  He is still Kol.  He is taking piano lessons, is practicing his lines for his part (Sgt. Tibbs) in "101 Dalmations"  and begging to do more chemistry experiments, or play on the Wii.  It has been easy to pretend, or forget (however briefly) that Kol is sick.  We've been more worried about Birgitte the last few weeks than about Kol.  Now, the pretending is over, and we need to face reality again.

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

Happy Birthday Kolbjorn!

Eight years ago we welcomed our son into the world. On Saturday, we celebrated with friends and family. Lots of friends and family. We didn't actually do a headcount at the party, but we started going through names of people that we remembered seeing at the party, and came up with over 50 kids and at least as many adults. A number came in costume - Jedi knights, Darth Vaders, bounty hunters, clonetrooper, princesses, droids, and Ewoks all made appearances (although we didn't get pictures of many of them - if we were to do this again, we would make sure to get someone to take more pictures, we were too busy visiting and trying to keep things organized!)

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

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:

Tuesday, September 14, 2010

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.  

      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.


      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.

      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.


      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.


      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.

      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.


      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

      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.

      Friday, September 3, 2010

      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.