Saturday, October 30, 2010

Second cycle of Cyclo started

Try saying that 10 times fast.

It's been a while since we've posted;  I'm sorry it's taken so long.  I have started a couple of posts, but haven't gotten them polished enough to actually post them.  I hope we're not losing readers because of the long silences - we really do appreciate all of you who read this blog, and who are keeping us in your thoughts and prayers.  We also really appreciate all of the comments, letters, e-mails and support we receive from all of you.  It helps us to know that we aren't alone, and that there are so many people who also care about Kol and our family.

We interrupt this post for a fun story . . .

Just now, as I started writing this, Kol told Mari that once his Cancer is over, he'll have 2 jobs - one as a sugar-free ice cream salesman, and the other will be as the first Cancer Doctor to invent a pill that people can take after radiation treatments, which will destroy the Cancer.  The radiation (he says) will destroy the outside of the tumour - the part that is blocking, or protecting the part of the tumour that is susceptible to the pill.  He also said that he wants to be the youngest Cancer Doctor that ever lived.  He then told me that he wants to be a naturopathic doctor, too, but he wants to be able to have access to a place where they can do MRIs.  I told him maybe he can figure out a way that he can combine the two.  His face brightened at that idea, and then he said that he'd have to learn how to do lots of equations.

And now back to the planned message . . .

We just spent the last 2 days in Saskatoon at the Cancer Center, where Kol got his 3rd and 4th doses of Cyclophosphamide (cyclo for short)- the chemo drug that he's been getting on the maintenance cycle.  Kirk has a post planned that will explain the treatment process in more detail, so I'll leave that to him.  We are back at home, and Kol is doing surprisingly well.  Last time, after the 2 days of cyclo, Kol was tired, and we expected this time to be worse - but he was feeling good enough to go to his play practise last night, and, aside from looking pale, he seems fine today. 

The cyclo damages the bone marrow, which produces white blood cells, which in turn fight infection.  White blood cells live approximately 5 days, so Kol's white blood cell counts will drop steadily over the next few days as the oldest cells die off, and as his body isn't able to produce new white cells.  They reach the lowest levels around days 7-10, and then should start to recover again.  Last time, Kol's counts were up in the safe range by day 14, so we hope it'll be about the same this time.  Today, we start giving Kol sub-cutaneous  (just under the skin - not into the blood stream) injections of G-CSF, or filgrastim, which helps stimulate the white blood cell growth.  He will get daily injections for a minimum of 7 days, or until his counts are high enough again.  He got 12 doses last month.  At the Cancer Center, Kol had something called an encephlon inserted in his arm, near his PICC line.  The G-CSF is injected into that, so he doesn't need to get poked every time he gets it.  We call the encephlon a mini-PICC.  The bad thing is that the encephlon only lasts a week, so he'll need a new one next week.  Two pokes are still better than 12.

We'll be starting another round of "house arrest" for Kol in the next couple of days.  It's a good thing that Kol is such a home body - he doesn't really miss not being able to go out too much - although I think he does miss Sunday School and play practise. 

kol says he does not miss SS and play practise!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mom dis is kol typing!

I guess I should learn not to leave my computer unattended, and unlocked.  I stand corrected.

The more I learn about the amount of abuse our bodies can withstand, the more amazed I am at the way God created us.  Doctors can't heal us - our own bodies do that.  We humans still don't understand all of the processes involved in life, health, or healing - but God does.  How cool is that?

Thursday, October 14, 2010

Life just keeps on keeping on

It's been a little while since our last update, so here's a quick glimpse at what's been going on with our family:
Kol recovering from chemo:
Kol has been under virtual "house arrest" the past two weeks, as his immune system took a big hit from the chemotherapy. Fortunately, his blood counts are back up again (as of Wednesday morning), so he'll be able to get out of the house again - go to rehearsal for "101 Dalmations", church, shopping, etc. Other than that, he's weathered this first round of chemo pretty well. Provided that his immune system continues to recover, he's scheduled to start the next round at the end of October.
Birgitte's journey:
Sometimes it feels like we could start a second blog to talk about Birgitte's issues. We've finally gotten her weaned off the clobazam, and in the last week we've seen a lot more of the "old Birgitte" - her eyes seem brighter, she laughs more naturally, she's been less impulsive, she's listening better, she's started reading again. She's still not totally back to her old self, but there is definite improvement. She's completely off any medication at the moment, and will likely stay off for at least a few more weeks before we consider trying a different drug. There is a higher risk of her having seizures, but we're relatively comfortable with that risk for now - it's been so encouraging to see her old personality start to return.
This old house:
I don't know if we've mentioned this much on the blog, but we've been in the middle of renovations and repairs in our basement most of this year - actually, the renovations have been ongoing for many years, but we had flooding in our basement just before Christmas that set us back a ways. The end is finally in sight for the lowest level - the electrical work is finally done, the flooring is coming together, the drywall should be done soon, and with any luck we'll have the two oldest girls moved down to their new bedroom before the end of the month - nearly a year behind schedule, but better late than never! Once the basement is done, we'll start working on the next level up - we're hoping to put in a reading/homeschool room, a new office (so the current office can be turned back into a bedroom), and better storage space. We're really looking forward to being able to live in our whole house, not just the top half!
Family matters:
Our family has been through a lot of change and stress this year, with Kolbjorn's diagnosis and Birgitte's medication-induced personality changes and behavior problems, with the new baby (who just turned 8 months old, where did the time go?), with crazy travel schedules, with all the kids homeschooling, with us all crammed together in half of our house... The cracks are beginning to show. There are lots of short tempers, lots of easily hurt feelings, trouble falling asleep and trouble getting out of bed, lack of motivation, focus, and energy. The fact that we're aware of what is happening is a good first step, but we're not exactly sure what the next step should be - family counseling perhaps? I'm sure that our kids are at least as worried and scared as Kristen and I are about all that has happened, and all that might happen - we need to find a way to work through this all so that it doesn't poison our family relationships. We're just not sure where to start looking for help - any suggestions would be welcome (in the comments, or email Kristen if you don't want to share publicly).

Prayer requests:

  • For Kolbjorn's continued healing, and for him to tolerate the next rounds of chemotherapy well
  • For Birgitte's continued healing, that she doesn't have any seizures while she is off medication, and that we will be able to find something that works without adverse side effects
  • For our family's emotional well-being, that we can all find healthy ways to work through our fears and worries
  • For the completion of our basement renovations!

Thanks again for all your support and encouragement, and hopefully we'll get back to posting more frequently!

Friday, October 1, 2010

So far, so good

Maintenance chemotherapy started this week, and so far Kol seems to be weathering it quite well. We spent pretty much all day Wednesday and Thursday at the cancer clinic in Saskatoon, staying at my parents' place overnight to avoid extra driving. The only adverse side effect so far has been some nausea, which seems to be well controlled by ondansetron (the same anti-nausea medication he received during radiation treatment) - he felt sick late Wednesday afternoon, but once we got him a dose of ondansetron he was fine again. There will probably be a bit of a learning curve again, figuring out what medications need to be administered at what time, but it shouldn't be too steep.

We're still going to have to keep a close eye on his blood counts, especially his white blood cells. As Kristen mentioned in the last post, this chemo drug is going to have a significant impact on his bone marrow, so he'll probably be house-bound for the next few days until we know that his immune system is healthy enough to be out and about. It looks like he'll be getting blood samples taken three or four times over the next three weeks, so we should be able to stay on top of things there. Hopefully we won't have to deal with too much "cabin fever"!

We get to stay home now until next Wednesday, when he goes back to the cancer center for a dose of vincristine (the "milder" chemo drug). There are some other things he needs before then (daily doses of a drug to help rebuild his bone marrow, blood tests), but those are all things that we can either do ourselves, or else get done at the health center here in Outlook.

Thanks again for all your prayers and encouragement!