When did your child have their port removed? We start LTM next mont. Our treatment Hosp, which is 2.5 hrs away, usually removes them after treatment. We have so much trouble getting prompt treatment at our local hospital that we want to eliminate the worry of a central line infection. Anyone have advice?
My daughter is a St Jude patient and we live only 20 minutes away, so they pretty much left it up to us. We planned it based on her Make-A-Wish trip and the fact that summer would be starting soon. I think they wanted us to wait until after we had final MRD results back just to be absolutely sure that treatment was officially over. Or maybe we wanted to wait for that.
I personally think it would be OK to leave it in for a bit if you have any reason to wait (low counts, travel, school schedule, etc.) because it seems to me that as the counts recover off-chemo that the risk of a port infection only goes lower. Then again, it's an unnecessary risk once chemo is finished.
If I was in your position, I would want to be have final MRD results in-hand and to be sure the ANC is back to normal (or close to it) before heading in to surgery.
PS - Ask the nurses and surgeons if you can keep the port. They examine it for defects in the lab and sometimes will give it back to the patient. Also, bring a slim pillow if you think the seatbelt in your vehicle will rub against the wound. They gave us a foam thingy after surgery that helped a lot for those post-surgery days.
Our hospital keeps the ports in for all of treatment as well. I believe they also wait for 3 months following the end of treatment in case of possible relapse. We've been told that we could opt to have it out when she is done with port chemotherapy, but I think we will leave it in until we are told that it is *okay* to have it taken out. My daughter too has butterfly sticks in her arms for bi-weekly counts and then port access for monthly chemo appointments.
Best of luck to you in LTM!