Saturday, March 19, 2011

No more PICC!

After 8 months of receiving daily saline and heparin flushes, having baths with saran wrap around his arm, and being careful when playing to keep from jostling the tube on the arm, Kol had his PICC line removed yesterday afternoon.  It was a very simple procedure - Kol sat with a warm pack on his arm for about 5-10 minutes, and then the nurse pulled off the dressing, and then just pulled out the tube.  Then she put pressure on the hole for about 5 more minutes, put a dressing on it, and it was done.  He kept the dressing on for 24 hours, and then we changed it to  a different kind of band-aid, which needs to stay in place for 2 days. After that, it can be removed, and Kol should be able to have a bath, and could even go swimming again.  He was very good about it, but I know he missed being able to swim in Grandma's pool last summer with his sisters. 

I can't believe how excited I was - still am, actually - to have that removed. I'm more excited about this than I was about Kol's last chemo treatment - or even than I was when I heard the result's from Monday's MRI.  It was a great relief to hear that the nodule remaining in Kol's brain is unchanged - and we were happy to get that report. Even though getting the PICC out was a small thing, it's having a big effect on us psychologically.  The PICC line was a symbol of treatment - like a leash. As long as Kol still had that line, there was a chance that it would be needed - that it would be used, and it would need to be cared for. He's free now. There are no more outward reminders of treatment. I know in my head that it would only take a few seconds to access a vein if he ever needs an I.V. again, and it could be needed at any time, but it might be never.

After so many months, Kol is finally free. We are finding that we can finally start to let go - to let ourselves believe that our son is getting better, and to stop looking over our shoulders. Last night there was a lightness in our house, in our interactions, that hasn't been here for a long time. I'm not saying that we've been gloomy and have gone around moping constantly, because we haven't. I think we've done a good job of being realistic, of accepting that Kol was sick, but not letting that knowledge colour every interaction. I'm saying that now there is an extra feeling of excitement in the air, of hopefulness, relief, and readiness to move on.  Maybe Kirk and I are finally starting to let our guard down and believe that this actually could be the end. We know that Kol might get worse again, but for now, we're just going to enjoy the progress Kol has made so far.

Kol has come so far - and he has handled everything so well, both emotionally and physically.  I'm so proud of my boy! There are no obvious signs of physical or neurological damage.  (To be fair, however, many of the side effects of radiation and chemo are "late effects" meaning that Kol won't lose the abilities that he has, but he may have difficulty acquiring new abilities.) We've noticed in the last couple of weeks that Kol's hair is starting to grow back. There is a bit of fuzz on his head. It's soft, but it's staying. His head is no longer smooth. Birgitte calls Kol "peach fuzz", and then Kol pretends to be annoyed.  He's pretty happy that his hair is coming back.  He probably won't like the new nickname much longer, though. 

We know that we still have a long way to go, but suddenly today I feel like I can start looking further  than just a week or two ahead.  We'll keep being vigilant about Kol's diet for at least 2 years. However, that is a small price to pay for having our healthy, happy son with us.  After all the abuse his little body has endured - throughout the surgery, radiation and chemotherapy - it will take a long time for it to recover. I want to give him the best possible raw materials to facilitate that recovery.

Kolbjorn still has a long way to go on his journey, but this long, rocky climb is hopefully over.  Maybe now we can sit and relax, and look ahead to a more leisurely pace for a while.

We have been so blessed throughout the last 10 months by the outpouring of support we have had from so many people, by the prayers that have been said on Kol's behalf, by the practical help and emotional support we have received, by the gifts we have received.  People who were strangers to us before have become valued friends.  We cannot express how thankful we are to everyone who has helped in any way.

Praise God for the miracles He has done in Kol's life, for allowing Kolbjorn a little more time with us, and for all of the people whose lives have been touched, and hopefully improved in some little way throughout Kolbjorn's journey and struggle. 

This phase of Kolbjorn's journey is over.
Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.


  1. I am so excited!! What wonderful news. We have been praying for your family and Kol this past week. Thanks for sharing the good news with us!

  2. What a wonderful answer to prayer and as Amy said, good news! You have all gone through this with amazing grace both poured out to you by God and shown to other people through your lives!