Tuesday, April 1, 2014

GI issues.


Although looking at the big picture, Watts is doing great in treatment, he has been having some ongoing problems with his gut for the past several weeks. His appetite has been sporadic, he has had bouts of watery diarrhea, and has seemed nauseated off and on (gagging and throwing up occasionally). Although we initially thought that his PCP prophylaxis was causing the problems, through the process of elimination we've finally determined that his daily at-home chemo, Mercaptopurine (6-mp), is the culprit. Within 48 hours of starting back on the drug, Watts' appetite completely disappears. It takes several days for it to return but the nausea and diarrhea seems to still linger. This drug is one that Watts will be on 75% of the time for the next 14 months. It is not suppose to have any side effects but the doctors have said that they know very little about the side effects for infants on this drug. [Since I am a part of an online support group for Infant ALL parents, I know that many of the infants have GI issues.]

I was able to talk to Watts' primary oncologist just a little while ago and we came up with a plan to address the nausea/lack of appetite. Watts is going to be on scheduled zofran at the max. dose in hopes to eliminate the nausea and he will start on an appetite stimulate on Thursday if his appetite hasn't improved. Our oncologist is also going to look into finding a different manufacturer for Watts' chemo-- there is a slight chance that Watts is sensitive to the way that the manufacturer processes the drug, not the drug itself. Probiotics (for the diarrhea) are not an option right now due to Watts' weakened immune system, but our oncologist did say that we can reevaluate its use after Watts gets to maintenance.

I am thankful for a plan and am trying to not stress. I hate, HATE, that this drug will be in Watts' system for the next 14 months but I also know that it is for his good. It is so easy for me to forget that when I am trying to get Watts to eat a single pretzel stick.

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On a less medical and more happy note, here are some cute pictures of our 20 month old (who is currently obsessed sunglasses and hats):






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