Sunday update

Kol is feeling more or less OK this morning, but he's still obviously dealing with some pain. The medication is helping, and there are times when he seems quite alert and cheerful, but he is sleeping often and seems a little groggy much of the time when he is awake. This is likely at least partly due to the morphine, I think. He hasn't eaten a lot yet, but he did eat a
banana earlier. Kristen isn't impressed with most of the hospital food (no surprises there), and will be getting our blender here ASAP to start making some smoothies for him.

Thank you for all the prayers and messages of encouragement, and sorry we can't necessarily reply to each one, but please know that they have brought us comfort.

Kol admitted to RUH

After a CT scan, Kol has been admitted to Royal University Hospital. Apparently a blood vessel in the tumour burst, which caused increased pressure, which in turn caused the pain and nausea. Kol is being given dexamethazone to reduce the swelling in his brain, ondansetron to deal with the nausea, and Tylenol to help with the pain and mild fever. Hopefully he will only be here for a couple days. Kristen and I (and Annika) will be staying in the city with him.

Kol going to ER in Saskatoon

We're just about to leave for Saskatoon to take Kol to the ER. He had a severe headache come on very suddenly this afternoon (Saturday), and after talking to his oncologist we are going to take him to the RUH ER for testing (probably CT scan) and hopefully some pain relief. Please pray.

Prayers, thanks, and updates

On Tuesday December 27 at 7:00pm, there will be a service of prayers for healing for Kolbjorn at Bethlehem Lutheran church in Outlook, similar to what we did back in June 2010. Please consider this your invitation to join us.

We want to say "Thank you" to everyone who has called us, emailed us, stopped to talk with us at church or the post office or the grocery store, or simply kept us in your prayers. We really appreciate your support.

We've spent this past week recovering from the shock of the MRI results, researching different treatments, and of course simply being caught up in the business of the holiday season - the Sunday School Christmas program plus various other recitals and concerts has kept us on the go for the past few days.

It looks like we won't get any new treatment started until after Christmas, so we're looking forward to being able to simply enjoy spending time with together with our families and friends. Merry Christmas to you, and may 2012 be a year of healing and renewal for us all.

"There's been some growth."

This is not a sentence I ever wanted to hear from Kol's oncologist. However, it's exactly what we heard when he called Wednesday to ask us to come in to see him on Thursday. If it's good news, the oncologist will just tell us on the phone. When it's bad, we get asked to come in person.

"There's been some growth."

It's not at all what we expected to hear. Kolbjorn has gained some much needed weight, has grown taller (which was not a given, since a possible side effect on the radiation was pituitary damage and hormone regulation), his hair is back (darker, but just as curly as before), he has lots of energy, and we learned on Tuesday that he is not developing cataracts yet (which we were told is a given as a result of the radiation). So far, there are only subtle signs of cognitive issues. We are constantly watching Kol for signs of relapse, and we haven't noticed any signs or symptoms of tumour growth - no co-ordination problems, headaches, unusual vomiting (although Kol was sensitive to a new supplement he recently started getting) or slurred speech. Kol has come through all of the treatment with flying colours.

"There's been some growth."

We feel blind-sided. Our hearts are broken, tears are close to the surface. The original tumour has started growing again. It is noticeably larger on the MRI images we saw. The possible, "tiny spot" that the radiologist "might" have seen in September has also grown. We don't want to do this again. I feel weak, overwhelmed. Scared. Lost.

"There's been some growth."

There is no standard protocol at this point - the only "proven" treatment is the chemo that Kol has already been through, and the oncologist says that the tumour that is left is resistant to that treatment. There is no effective treatment that the Cancer Agency can offer Kolbjorn at all. Nothing proven, all experimental, nothing that has been proven to be even as effective as the treatment Kol has already had.

The oncologist did give us options for a different chemo treatment, either a cocktail of two chemo drugs, or being part of a study that would possibly add a third drug to the mix - in either case, 12 treatment cycles, each cycle lasting a month. One of the drugs is administered intravenously, and would require Kol to be admitted to hospital for a minimum of five days each cycle during treatment. There is no data as to how effective it would be for Kol's condition. In addition to the typical chemo side effects (weakness, low appetite, nausea, vomiting, low blood counts, hair loss) one of these drugs causes severe diarrhea, and another one would put Kol at risk for bleeding. If he were on that drug, he would not be eligible for surgery of any kind until a period of time after discontinuing it.

Surgery may be an option - the oncologist hasn't consulted Kol's neurosurgeon yet - however the tumour is apparently near a brain structure that contains a bundle of nerves that control movement, which could make it tricky. The doctor didn't really seem to be too hopeful about the possibility.

"There's been some growth."

This leaves us with few choices, and yet lots of choices. Because there is no proven effective cure, we can not be considered negligent for choosing alternative treatments, or even for choosing to do nothing at all. I've done tons of reading and research in the last 18 + months, and there are some encouraging alternative treatments that wouldn't impact Kol's quality of life so drastically.

We are taking some time to gather more information and to pray. We do know, however that we don't have too long to make our decision, as this tumour is growing quickly, and the more growth, the harder it will be to treat.

"There's been some growth."

Throughout the last 18 months, we as a family have grown in many ways. And, with this new tumour growth, I expect more growth. It's just so painful. I am so proud of our kids - of the way they pulled together to support each other when we told them about what the doctor said.

We know that God is the great healer. He has Kol in his hands, and I know that He is capable of healing our precious son. Please pray for direction for us; for guidance in making the decisions we have to make, and for peace for us - especially for Kolbjorn and the girls.

It's been a long time since I've thought about the old hymn - the one that kept popping into my head when Kol was first diagnosed, but I've been hearing it again throughout the last 24 hours.

To God be the glory, great things he hath done!
So loved he the world that he gave us his Son,
who yielded his life an atonement for sin,
and opened the lifegate 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 thru Jesus the Son,
and give him the glory, great things he hath 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 hath taught us, great things he hath done,
and great our rejoicing thru Jesus the Son;
but purer, and higher, and greater will be
our wonder, our transport, when Jesus we see.
(refrain)

Above all, please also pray fervently for Kol's complete recovery. The God of the Bible, God of Abraham and Isaac, who created the world, who has conquered evil and who sent Jesus to be our saviour, is infinitely capable of healing a little boy. We give God the glory for Kol's health and survival to this point. We give Him the glory for healing our son, and for the work He continues to do in our lives. Pray that God uses our pain and struggle to reach others. It's painful for us, but I think it would be even more painful if I knew that all of our pain had no purpose - that nothing good would come from our hurt. I want to believe - maybe even need to believe - that our pain now is small in comparison to an eternity without God.

MRI results coming

We have an appointment with Kol's oncologist tomorrow morning (Thursday) to discuss the results of his recent MRI scan. Please pray.

On the beach

The water rushes towards me. As it washes over my feet and my legs, the force of the moving water threatens to knock me over. As it retreats back to the ocean, I feel the sand being pulled from underneath my feet. I don't know if the tide is rising or falling. Still, I stand firm, and await the next wave. This is our family's journey. This is Kolbjorn's journey.

MRI and travels

We just got the date for Kol's next MRI - Friday, December 2nd, at 3:00pm. We'd appreciate your prayers, if for nothing else than our nerves. The last MRI indicated that there may possibly be new growth, but Kol has been feeling fine, with no unusual headaches or any other symptoms, so we're not too worried... but yes, we are still a bit nervous.

Also, we realized that we hadn't mentioned our upcoming travels - in less than 48 hours, we should be in the air on our way to California! We're going to be there for five days with my parents - our itinerary isn't set in stone yet, but we're planning on a couple days at Disneyland, a day or two at Legoland, and hopefully a day at Sea World in San Diego. The kids are also looking forward to seeing the ocean for the first time, although I don't expect we'll do any swimming (except maybe at the heated pool at the hotel).

We're all getting pretty excited - it should be a great family time for us, and any excuse to get away from snow and ice is just fine by me!

Regina fundraiser for Camp Circle O'Friends

On Wednesday night, we were honoured to be a part of a charity auction put on by the Canadian Progress Club - Regina Centre to benefit Camp Circle O'Friends. Kol was asked to give a short speech, similar to what he did for the National Inside Ride fundraiser for CCoF earlier this fall, and he did a great job:

And we all got to dress up real fancy too:

We clean up pretty good, eh?

Thank-you to Camp Circle O'Friends and to the Progress Club for making us a part of this event!

Home again

56 hours and 1200 kilometers later, we have arrived back home from Calgary. Kol's dental work went quite well - all his mercury amalgam fillings have been safely removed and replaced with composite. He also received intravenous vitamin C as part of the mercury removal protocol, which meant that he had to drink a lot of water afterwards to help flush out his system, which meant that our drive home from Calgary was frequently interrupted by "the call of nature".

The rest of our stay in Calgary was enjoyable. The hotel was good - it won't be winning three or four stars in any travel guides, but our room was clean, the staff was friendly, there was free WiFi, and the beds were comfortable. IKEA was good for the most part, except for the disappointing discovery that they no longer carried Daim candy - after spending the necessary few hours walking through the store, I was really looking forward to getting a big bag of Daim. The Apple store was amazing - I got to try out some different Mac systems and iPhones, and we got a recommendation for a good drop-resistant iPad case - but the only thing I brought home from there was a list of what I want to buy if I win the lottery stumble across a backpack full of unmarked $20 bills get a few good programming gigs.

As much as we enjoyed this trip, the best part was still arriving at home, seeing our "missing" girls, and having our family together once again. Be it ever so humble...