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QUESTION: As many of you know, our daughter was diagnosed with Hodgkin's Disease last
month. Things have been going very well with her treatment. One of the
chemo treatments that she receives is home infusions of Gancyclovir.
Recently, we had a big fight with her biological mother, who happens to be
an RN and the Nursing Coordinator of her Home Nursing agency, about her
father and I doing the chemo ourselves (which we have been trained and are
capable of doing). I guess my question to anyone in this group is whether
or not it is unusual for parents or other family members, who have been
trained, to take care of some of the infusions themselves. For us, this
would enable us to spend our weeks with our children during the chemo cycles
doing things that we want to do without being tied to a home nursing
schedule. She had some issues with "side effects" that I am unsure
of...particularly since her oncologist (on our very first meeting) plainly
stated that we should ALL learn how to deliver her home infusions and change
her broviac dressing. I don't want to badmouth someone who is going through
the same thing as we are BUT...we have had so much experience with her
controlling nature that I need to have another viewpoint on this one.
ANSWER: If you could only talk to other parents...I can't tell you how many end up
doing exactly what you are at home with your daughter..parents end up learning
how to access ports, give neupogen shots, feed through g-tubes, everything...it
is completely normal for you all to be doing this, especially with receiving
training...if we had had more time with hannah, I'm sure we'd have done the
same. You're doing fine...it sounds to me....and remember, any questions you DO
have, can easily be answered by her oncologist..not another nurse. one of my
dearest friends, is about 20 yrs older than I am, and she's a home health
nurse. When we were placed with hospice, my friend wanted to give her advice
all the time..I respect her so, and that made it difficult at first, until we
made the decision to not listen to her anymore. Especially at the end of
hannah's life..we didn't even let her in hannah's room the last 3 days.
Everyone gets panicky..because none of us like being out of control....you guys
establish the boundries, and stick to them...it will bring peace. Keep up the
good work
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