Tuesday, April 15, 2008

Dilemma

We've been given conflicting information. In an attempt to resolve it, we've emailed the Rhabdo-Kids list the following request:

Hi All,


Our Jordan's treatment has been changed from VDC + IE to Irinotecan, Temidar, and Vincristine. The new protocol started last Saturday, 4/12. He was premedicated with three anti emetics, Decadron, Ativan, and Kytril. We resisted the Kytril because it causes Jordan's heart rate to decrease to about 40 beats per minute. The nurse called the pharmacist to Jordan's room to assure us that this would not happen again, that it had only happened in the past because it was given with other closely related antiemetics. Atropine was the fourth and final drug in his premed combo. It was explained at that time, that the Atropine, usually given for cardiac issues, was to prevent diarrhea, Irinotecan's chief side effect.

Just as we feared, Jordan's heart rate dropped to 40 BPM today, and the Kytril was discontinued. The problem is that the Atropine was discontinued also, and diarrhea has begun. We are now being told that the Atropine was not given to prevent diarrhea, that it was linked with the Kytril, and that since the Kytril has been discontinued, it should be discontinued as well. Meanwhile, the diarrhea intensifies. Please fill us in on which premeds are commonly used with Irinotecan. The confusion is creating a bit of tension with one or two members of the hospital staff.

Best regards,
Bonnie, mom of Jordan
dx 1/08; mets ARMS

Jordan has been sleeping much of the day, and has experienced some dizziness. His WBC has fallen to .2, also written as 200,. We are happy to report, though, that since Sunday, he has been able to resume walking.

Thank you for your emails, comments, and prayers. They continue to bless and encourage each of us.