Friday, November 18, 2011

Port Access

Joey saw Dr. Rosen this week. When he had his Hickman, we went there every week to have blood drawn for labs.  Now, we do 3 weeks of labs at our primary doctor's office and only see Dr. Rosen every 4 weeks.  It has been an adjustment for me to not see him more often. Joey has been doing really well since his last surgery, so it's ok, but it was a change for me.

His checkup was great. This weekend he'll be starting a new medicine that he'll take for the rest of treatment and a little while after. It will probably be the summer of 2013 before he stops taking it. I'm hoping there are no side effects, but I think the risk of that is pretty low. 

The goal of the current treatment is to push down his white blood cells enough to keep them from spitting out bad cells but high enough that we don't cause other issues (infections, etc).  The best range for his WBC is 2.5-3.5K.  Joey's has been staying right around 3.0, so it's just perfect.  He is one of those kids whose body reacts well to the treatment.  He does have about 1 day a week that he doesn't feel well.  Last week, he had one night when he woke up vomiting and then had a low fever the next day, but then felt better by that night. He didn't feel well yesterday and rested through most of school again, but it didn't last too long. 

Here is a picture of the his port being accessed.  It's a bent needle that is pushed through the skin and into the hard plastic port.  It doesn't slide in gracefully; it has to be forced, but they are fast so it's not too bad. It looks really strange, though.  The red line is the scar from the surgery - it will remain with him forever (but may lighten) to remind him of this phase of his life.  He held on tight to his little penguin for support. 

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