We have officially started Long Term Maintenance so I can cross that off my list. Dayssi did great this morning, no anxiety, no discomfort. We started her 5-day steroid "pulse" (once every month) and she swallowed the first pill with one sip of juice. She is a pro. She even makes the face of an adult taking a pill, that slack-jaw "I don't want to taste this thing so I'm not going to suck on it or crush it or let it touch any taste buds" kinda face. The Zantac, which follows the steroid, is her least favorite medication right now and I'm going to see if we can get that in pill form too.
We decided not to have Dayssi's port removed today although it was an option. We are having a little post-decision regret, having thought harder about the trade-offs (risk of infection versus discomfort having blood draws and monthly chemo without the port, so using IVs and regular inside of the elbow technology). We will probably have it removed in February, when Dayssi has her next lumbar puncture. No sense having an extra general anesthesia, which carries its own risks.
Her hair should start growing back during this phase, and she will be happy about that. Can't wait to see what it looks like.
3 comments:
Congratulations! This is a great phase to have entered!
We're glad it went smoothly and are eager to see the new hair-do when you have time to take photos.
Love to you all.
I feel it was a good decision not to remove the port. I know
she is vulnerable but you know the the ways to try to avoid infections. Our Dayssi, The Fighter is still only Three years old.The less discomfort
the less the Psychological Impact.Indeed she is a Pro but
so are her Parents ! By the way
Deb you should think about writing a Book on ALL's. You are
so Good in putting into words
all that is happening. Thank you
and love to all. Last but not least.Don't worry about the hair
It will grow back and will be
more than you or Dayssi can control.Granddad
Hello family! I am in Tanzania on an internship and often think about how lucky I am for this opportunity. I hope that years from now I can follow the progress of my two young cousins as they embark on new journeys! Deb and Jim, if you were strong enough to fight the currents between Young Island and Villa Beach then you've got this beat! Love Henria
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