Saturday, July 24, 2010

Side effects

Up until now, Kol hasn't really been showing many side effects of his treatment.  He was nauseous and started losing his appetite for a while, but once he got a prescription for the nausea, he felt better, and his appetite returned.  It was easy for us to believe that Kol would do well with the treatment, and even that he may be lucky enough not to experience the side effects we'd been warned about.

Then came Wednesday, with the low white blood cell count.   We also noticed that the scar from Kol's brain surgery was getting red, and his head was getting really itchy.  On Thursday, one of the radiation therapists asked if Kol had lost any hair yet, if we'd noticed any hairs on his pillow.  We hadn't.  The next morning, there was hair on his pillow.  This morning (Saturday), there were dozens of 1 inch long hairs all over the neck of Kol's pyjamas.  It looked as if he had been carrying a shedding cat around his neck.  He had a shower this afternoon, and now there are patches of hair missing.  He was scared to have the shower, because I had said that it would make his hair come out faster.  He didn't want to lose it.  We had to tell him that nothing could stop his hair from falling out at this point.  Kol decided a shower would be okay when we told him that it would help make his head less itchy.  Aside from a few tears at first, he's taking it all so well.  I can't believe how brave he's being.  I know I wouldn't accept it all so graciously.

Now, I guess we need to start watching out for some of the more serious side effects.  Kol could start having seizures, vision problems, difficulties balancing, fatigue, and weakness.  There might be a lot of swelling in his brain, causing the symptoms (headaches) he had before the surgery to come back.  They might last for several months until the swelling goes down.  Dead cells are not removed as quickly from the brain as they are from other parts of the body, which means the swelling will last for a long time.  What scares me most is that we won't know if he's getting headaches from the swelling, or from a returning tumour. 

There is also the risk of delayed side-effects which might not develop for years after the treatment.  These include: decreased intellect, memory impairment, confusion, personality changes, and alteration of the normal function of the area irradiated.  There is also a possibility that the radiation itself will cause another tumour as a result of all of the damaged cells. 

I pray that none of these more permanent, debilitating side effects will occur.  We know that Kolbjorn will probably develop cataracts in a few years, have hormone difficulties and will  probably be shorter thsn he should be.  As much as I don't want Kol to experience any of these side effects, these are manageable, and can be compensated for, so I'm (we're) not as concerned about them.  I just don't want to lose my boy now that he's back again.

On the plus side, aloe gel is working well for the itchiness and the redness on Kol's head, and his blood counts had risen on Friday.  The radiation therapists said that if the counts continue to rise, the last 3 craniospinal (head and spine) radiation treatments will be done next week.  From a "radio-biological" point of view, the treatments are more effective if they are done as close together as possible.

Every time we saw Kol's neurosurgeon, he reminded us to take one day at a time.  I need someone to tell me that now.

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.


  1. my thoughts and prayers are with you and your family..This is a rough period for all of you, yet God makes good things come out of horrible situations..We may never know in our life time what the good of all this is, just one day at a time..He sounds like a really brave boy and such a strong boy to endure all of this. He has great parents and sisters who love him, he will get through this!!

  2. I have been following your post since I saw a prayer request for you on facebook. My heart and prayers go out to your family during this time. May Gods peace, love and understanding be with you. I have told your story to others and you are being prayed for in their churches as well.