Sunday, May 27, 2012

Thank you

For two years, and especially for the past week, you have supported us, given us encouragement and comfort, prayed for and with us, and shared your love with us. We've said it before, but it bears saying again - thank you all so incredibly much for everything you have done for Kolbjorn and for our family. Some people have told us how strong we have been, but all I can say is that it's easy to look strong when we have so very many people holding us up. The local newspaper ran a tribute to Kol, calling him "the boy who lifted a town", but at the same time, the town and our community of friends and family across the country and around the world lifted us.

Kol's funeral was yesterday. As hard as it was to say goodbye to Kol, we rejoice that he is no longer in pain, and it was so absolutely uplifting to be able to connect with so many friends and family, to be able to share hugs, laughter, and tears with you. It was a big step in the healing process for us, an process that will be ongoing for some time.

Some have asked about the future of this blog, now that Kol is gone. We want to assure you that we intend to keep blogging - obviously the focus will change from Kolbjorn's journey to our family's journey, the updates will likely not be as urgent, but we have appreciated having this place to communicate with our friends and family. Over the next week or so, we'll be catching up on some much-needed downtime with our family, so we probably won't blog much for a while, but we will be back. Kristen, for one, has too many things to say (or at least that's what she tells me).

Again, thank you all so very much for all that you've done for Kol and for us, and please continue to keep us in your prayers. May God bless you and keep you, and we'll talk to you soon.

Kirk, Kristen, Julianna, Mari, Birgitte, and Annika Friggstad

Thursday, May 24, 2012

Obituary, viewing, and thanks

Just a few things we'd like to let you all know about:

  • Kol's obituary appeared in the Saskatoon Star Phoenix Thursday morning - I'm not sure if it will appear in the Friday edition as well, but it can be viewed online as well.
  • There will be a viewing and short prayer service on Saturday at 11:00am at the church, for family and for anyone who would like to attend. The casket will remain open until shortly before the funeral service begins at 2:00pm.
  • If you need a place to stay in Outlook, a number of people have offered their homes - please let us know and we'll help you find a bed.
  • If you don't know how to get to the church, please be aware that Google Maps shows it in the wrong spot - it should be at the corner of Ash Street and 4th Avenue, further north than where Google puts it.
Thank you all so much for your comments, emails, cards, letters, flowers, food, phone calls, hugs, and prayers. As sad as we are to be separated from Kol, we are so glad to be part of such a caring and loving community - not only our local community here in Outlook, but all our friends, family, and supporters throughout the province, across Canada and the USA, and around the world. We are blessed by you. Thank you again so very much.

Wednesday, May 23, 2012

Funeral details

Kol's funeral will be this Saturday, May 26, 2:00pm at Bethlehem Lutheran Church in Outlook. Please join us as we celebrate Kol's life, and take time to say good-bye to him. Children are more than welcome too.

Monday, May 21, 2012

Good-night, sweet prince.

Kol passed away quietly around 9:10pm tonight, in our van, on our way home to Outlook, surrounded by his loving family. We are now home in Outlook, with our families either already here or on their way. Thank you all so much for your continued prayers and support. We thank God that Kol is free from pain and suffering. And we thank God for his promises to comfort and sustain us through the trials of life. Amen.

Soon, and very soon

Kol is fading quickly. The doctors say it may be hours, it may be days, but it probably won't be weeks. After his seizure this morning, Kol had a brief time awake, but hasn't opened his eyes since. He is showing signs of neurological decline, and his breathing is becoming irregular and laboured. We are taking him home to Outlook tonight, with medicine and supplies to keep him comfortable. We ask for your prayers for Kol and for our family.


Kol had a rough night in the hospital. Despite getting IV meds for pain and nausea, he still threw up a few times, and still appears to be in pain - it's hard to say for sure, as he has been quite "non-verbal" most of the time.

Then this morning, Kol had what appeared to be a seizure - his body got very stiff and his eyes rolled up. His doctors say this is likely due to the tumour putting pressure on the brain, and are recommending adding anti-seizure medications to the painkiller and anti-nausea drugs that he's already getting. He has also been moved from his room on the ward to a room in observation, as some of the new meds need to be watched closely at first.

This also means that our "overnight" stay is being extended at least one more night. We're hoping and praying that it won't get any longer than that. Thank you all much for your prayers and support.

Sunday, May 20, 2012

Another hospital admission

The last few days have again been up and down.  Friday and Saturday were both very good days.  Today, however, Kol's vomiting got worse again, and he wasn't able to keep the anti-nausea medications in his system.  Without anti-nausea medications, the pain medication won't stay down, either.  We talked with Kol's doctors, and have decided to take Kol back to RUH so we can get him stabilized with iv meds.   This way, we can get Kol's pain under control faster, and he should be feeling better within a day. The doctor assures us that Kol will only be in hospital overnight. 

We are just packing up the van, and will be leaving shortly.  The girls are coming to Saskatoon with us, and will be hanging out at grandma and grandpa's house for a while. 

Tuesday, May 15, 2012

A Superhero Named Kol

Hey everyone reading this. This is Julianna and Mari, Kol's big sisters. Tonight Kol told mom he was feeling like a 'small, tiny, mite', and that he wanted to be a superhero. We're going to show him that he is a superhero! Contact us or Mom/Dad however you want, or leave a comment below, and let us know why you think he's a superhero. We'll put all your responses, and any bible verses you want us to, into a slide show and surprise him. You can choose whether you want your name in it, or if you want to be anonymous. This is a surprise for Kol, so we would appreciate it if no one told him anything about it!

Julianna and Mari

Saturday, May 12, 2012

Prayer for healing

I am constantly overwhelmed and surprised at the love and support that we have been given while on this journey through childhood brain cancer.  Both Kirk and I were surprised at how many people came out to Outlook - many of whom drove quite a long way, and many of whom we haven't seen in years - just to gather to pray.  We're honoured that so many people made the effort to come pray for healing.  It was so appreciated.  Thank-you from the bottom of our hearts.  Thank-you also to those who couldn't come, but took the time to pray for Kol wherever you were.  Thank-you also to everyone who fasted and spent time in personal prayer in the time leading up to the healing service.

It was also a privilege for us be able to share the time with others in need of prayer, and to be able to pray for their needs as well.  It's comforting knowing that we can cling to God's promises, and trust that He who created the world, the God of Jacob, our Heavenly Father, will answer. 
Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.  James 5:13 - 16
Above all, we thank God for hearing our prayers; for the healing He has done already in Kol's life; for bringing so many people, from all over the world and from diverse backgrounds together in a common purpose; for the lives that have been touched and changed through hearing Kol's story; for the plans He has for Kol's future.

Wednesday, May 9, 2012

Kol is in a lot of pain again.

It's been a couple of long days.  I'm tired.  I'm emotional. 

When I published the last blog post, on Sunday afternoon, Kol was doing really well.  A couple of hours later, he crashed.  His headache came back and he started vomiting again.  He slept well that night, however, and he spent most of Monday sitting on the couch.  On Tuesday, Kol didn't even get out of bed, except to use the bathroom. He was constantly vomiting - it was only in the late afternoon that the vomiting finally settled down.  His headache is constant, not really letting up at all.  Movement makes him sick, so he vomits every time he gets up to the bathroom.  We've been fighting to keep his medications in his system, let alone any food or liquid.  He's not hungry, either, so that makes it even harder.  I hooked him up to the IV on Tuesday,  but something in his PICC line got clogged, or the line moved somehow, which stopped the flow.  I'm trying to get an IV pump for at home, so we can give him more IV fluids, if necessary.

It seems like we've spent lots of time talking to doctors over the last few days.  I've sent and received e-mails from Dr. Khan in Toronto, Dr McKinney in Victoria, and we've spoken with at least 2 doctors from Saskatoon as well as a couple of nurses, and a pharmacist.  It's tiring trying to put all of the pieces together, and co-ordinate the recommendations.  I guess that's our fault for not just sticking with one doctor, and one set of providers.  On the other hand, we're getting lots of support and advice from all of the doctors, and especially from the doctors outside of the "conventional" system.   

Kol just started a new treatment last Tuesday, which might be contributing to the nausea.  It's tempting to stop the treatment, but in many ways, it feels like this is our last chance.  Some people respond really well to this treatment - and DCA has been known to shrink tumours quickly - so if Kol responds to it, it could be extremely effective. The doctors who are familiar with DCA and it's use are recommending that we stick with it. 

We know that the pain and vomiting Kol is experiencing is due to excess pressure in his brain.  What we don't know, is what is causing the increased pressure.  It could be several things.  It could be that the tumour is starting to respond to the DCA treatment, causing increased swelling around the tumour, or it could be that the tumour has just grown so big.  Either way, it's not easy to manage.

A couple of weeks ago, I talked about being angry - angrier than I ever remember being in my whole life.  On Monday, I was more scared than I ever remember being. I hate seeing Kol this sick, and in so much pain.  As you all know, I tend to do lots of research.  I need to know what my options are, and I can't relax until I feel I know what is going on.  I refuse to just follow blindly, taking someone else's opinions or advice at face value.  (Maybe Kirk's skepticism has rubbed off on me over the last 18 years?)   However, once I have as much information as I can get, or at least as much as I can handle, I tend to rely heavily on my "gut feelings" or intuition when it comes to making decisions.  I had a "gut feeling" that Kol had a brain tumour weeks before it was diagnosed.  At that time, I also had a "gut feeling" that Kol would be alright - that he would survive, and that everything would work out.   I felt at peace, and just knew that Kol would be alright, and that things would unfold as they should.  I've relied on that intuitive knowledge heavily for the last 2 years.  It's probably the reason I've been as strong as I have been.  On Monday, I was second guessing everything.  My faith, my confidence was failing.  One of my greatest fears has been the thought of having to watch, almost helplessly, while Kol was in pain.  Sometimes, that scares me more than the thought of Kol dying.  That has been our reality the last few days.

We are making progress, but it is slow going, and we still have options.  Almost all of the doctors seem to think, (or are at least giving me the impression that they think) this is a temporary, but we know that with a brain tumour, anything can happen - and it can happen quickly.  On Friday morning, Kol was running through the house, being goofy.  A bit more than an hour later, he vomited all over the floor at the Cancer center.  It hasn't gotten better since.

We thank God for each person who reads this blog, for all of the prayers that so many of you have raised, and continue to raise for Kol and for our family.  We know that we're all in God's hands and that He is powerful.  The God who created the universe and knows how many hairs Kol has on his head, is powerful.  He is mighty to save.  Someone told me to read this passage a few days ago.  I've been relying on it a lot since.

19 and how very great is his power at work in us who believe. This power working in us is the same as the mighty strength20 which he used when he raised Christ from death and seated him at his right side in the heavenly world.21 Christ rules there above all heavenly rulers, authorities, powers, and lords; he has a title superior to all titles of authority in this world and in the next. 

Sunday, May 6, 2012

Crisis over

Kol and I are back home again.  Kol was just in the hospital for observation overnight, receiving IV fluids.  We also increased his pain medication, so he's back to himself - mostly.  He is receiving morphine pretty regularly, which I'm not pleased about, but at least he's not in as much pain.  I'm hoping that the morphine is just a temporary thing, but it may not be.  He's apparently at a relatively low dose, so that's encouraging.  We were able to bring some IV supplies home with us, so that we can give Kol IV fluids ourselves in the future, if Kol gets dehydrated again.

I'm glad we got Kol the IV liquids.  Right after the IV was started, I came home and got Kol his blanket, some snacks, and his medications - which I absentmindedly left on the table on our way out the door.  When I got back to the hospital 30 minutes later, Kol was much more active,  was moving easier, and was much more communicative than he had been when I left.  It was great to see.  It was a long night, but it was a good one, too.  I stayed at the hospital, in a hide-a-bed, and Annika stayed with me.

I'm not sure what caused the dehydration/vomiting in the first place - and that worries me some.  It could be several things, or a combination - who knows.  1) He could have had a touch of the flu, but he didn't have a fever.  2) We just started him on some new medication which can cause nausea, but shouldn't cause vomiting.  In people who respond to the treatment, it can cause tumours to shrink rather quickly, which could cause vomiting (as the brain adjusts) but Kol's only been getting it since Tuesday, and it's not supposed to work that fast.  3) The tumour itself, if it starts to grow too big, can cause vomiting as the brain has to adjust to the cramped space. 4) We ran out of one of Kol's supplements - one that is used to reduce inflammation.  We had ordered more but it took longer than expected to arrive, so he missed several doses of it.

Probably our biggest concern, however, is more pronounced weakness on Kol's right side.  We've noticed that he he hasn't been using his right hand as much in the last few days, and when he smiles or talks, the right side of his mouth doesn't move the way it should.  He had very pronounced right side weakness after surgery.  It's not as pronounced now as it was then, but it is noticeable.  He can make the muscles move on his face if he concentrates, however, and his grip strength is equal in both hands, so that is encouraging.

Thank-you again for your prayers, and we hope to see you at the healing service this Friday night.

Saturday, May 5, 2012

Pain crisis

Kol is in rough shape right now - over the last 24 to 36 hours, he's been in more pain than usual, and for most of Friday had a constant headache.  He wasn't able to keep anything in his system - not even ondansetron (which is an anti-nausea medication).  

Kol had an appointment at the Cancer Centre yesterday morning, where he ended up vomiting all over the floor in front of the reception desk.  It didn't get much better after that.  Kol got some IV fluids, and some IV ondansetron, but it didn't help.  Kol had a rough night, and was in a lot of pain.  His headache was bad, and nothing would work.  It's been better today, but he's lost so much fluid, and he hasn't eaten, so he's getting dehydrated.

Kristen got a call from the pediatric palliative care specialist today (we were supposed to meet with her yesterday, but it didn't happen).  She does a lot of work with pain management, and said that she believes Kol is having a "pain crisis" so we discussed pain management strategies.  As a result, Kristen is getting ready to take Kol to the hospital in Outlook so he can get some IV fluids, and hopefully, we'll be able to get his pain under control a bit better.  We should only be at the hospital for a few hours.

Thank-you for praying for us.  If you can make it to the healing service on Friday night, we'd love to see you.

Friday, May 4, 2012

Come pray with us!

We will be having another prayer and healing service for Kolbjorn.  It will be on Friday, May 11, at 7:30, at Bethlehem Lutheran Church in Outlook.  We'll have praise time, and then we'll have a service of healing and prayer for Kolbjorn.  Following the prayers for Kol, there will be an opportunity for anyone else to receive prayer for healing as well - be it physical, emotional, mental, or spiritual.

We have been overwhelmed at the number of people who have come to pray for healing for Kolbjorn in the past; it's wonderful to have people gather just to pray.  This will be an opportunity for us to "pass it on" by taking the opportunity to pray for others in need as well.  Please feel free to come, to pray and to be prayed for, and pass this message on to anyone else who needs healing.  This night is not just for Kolbjorn - it's for everyone.