Side Effects

When Channing was first diagnosed I was afraid of what side effects my poor boy would have to endure.  Amazingly, so far his side effects have been minimal.  The first couple weeks Channing was completely withdrawn.  He liked to lay in a dark room with the lights out and stare at the walls.  He would do this for hours.  Thankfully, he snapped out of it after a couple weeks because it was heart breaking.  After that during the first month the biggest side effect was the non-stop burrito/salt craving from the steriods, And the constant need to go to the bathroom.  We were up with Chan 3-4 times a night taking him to the bathroom, it was almost like we had an infant in the house.  My amazing husband always got up with Channing at night because of the 'toxic' urine and because I am not a very good person in the middle of the night and tend to make things worse.  We didn't get a lot of sleep that first month.

I was told that Chans hair should start falling out 2-3 weeks into treatment, so to prepare we cut Jakey and Chans hair shorter.  Channings hair did thin out a bit, and became more coarse in texture, but he never did loose it.  It still could happen but for now its the same length it was when I cut it because it isn't growing much.
Channing also had a hard time with physical activity during the first month and a half of treatment.  He couldn't walk in a sandy playground or climb the playground equipment.  It was so sad to see him try but not be able to do something he was able to do just a month earlier.  One of the chemos that Chan gets can cause problems with motor skills in the nerve endings, and this is what partially made it hard for Chan to do these things.  The other issue was the rapid weight gain that Chan had due to the steriods.  We would joke that Chan and I were competing for largest 'baby' belly, but that I had 9 months to get used to the weight gain and Chan only had a week. We avioded parks for that time, because it broke my heart to see him get frustrated when trying to do something he couldn't and not understanding why.  Now, he is basically back to normal with climbing, walking, and playing.  Though he does still make a very large stance with his legs to keep his balance when getting up.

Another side effect in the first month was constipation.  If you have read my blog up to date then you know a lot about what we dealt with.  Poor kid had to have adult laxatives multiple times to help him get cleared out.  He also had 4-5 x rays to the stomach tomake sure there wasn't anything stuck causing the problem.   It was very frustrating for me, and I was annoyed that such a 'small' thing as being constipated could cause such big problems in a cancer patient.  I also felt like a bad mom beause they would ask me when Chan had his last bowel movement and I had a hard time remembering if it was Jakob who went or Chan who went. I am constantly forgetting which child did what because they are the same age and do (did) things so similarly. 

After the the first month, most of the above side effects were limited.  Now, with his new medication Channing has no appetite, and things that used to be his favorites he refuses to eat.  He is also throwing up every other day to every 3 days.  We think this is because of the oral chemo he gets every night.  He are trying to remember to give him his anti-nausea medicine when we give him his oral chemo to limit his throwing up.  Poor kid does really well with the throwing up, he just yells "Im gonna throw up" and runs to the bathroom.  Then he lays down for about a half hour and is then back to his normal crazy self.  

Channing is basically a normal almost 4 yr old (I can't believe in one month my babies will be 4!!!).  He runs, plays, fights, and laughs.  He just talks about his dr and his port all the time.  He is far more knowledgable about medical things then any child his age should be but he does a great job of doing what he needs to do to get better.