Wednesday, December 21, 2011

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.

Thursday, December 15, 2011

"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.

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.
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.

Wednesday, December 14, 2011

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.