September 6, 2013

MIBG Therapy

The MIBG infusion started today.  The drug was infused via IV, using her broviac line over about an hour and a half.  There were about six doctors milling about during the process.  A radiation physicist, visiting nuclear medicine guy from Canada, oncologists, etc.  This treatment is relatively new.  They have been doing it for awhile, but it's still a phase one (late phase one, which is good to know) trial.  By comparison administering chemo is pretty routine.  Once the MIBG started running we all had to leave the room and Ryan and I were given our radiation safety education.  Ryan has had a lot of radiation safety training, so none of this was too exciting for him, but it is all new to me.

Madeleine is feeling okay.  She had a touch of nausea a little earlier, but it seems that was quickly controlled with some anti-nausea meds.  They really don't want her throwing up because the radioactivity is released through all bodily secretions (urine, tears, sweat, vomit, etc.), and cleaning up any of that is not a whole lot of fun.  Her catheter that was placed yesterday was hooked up to a pump that runs directly into a constantly flushing toilet.

We have to suit up to enter the room: gown, booties, and gloves.  The less time spent on her side of the lead wall, the better.  It's much better, if possible, to hand things over the lead wall.  We also have to wear a monitor every time we go in the room, and then write down the starting and ending number after exiting.  The radiation people add up these numbers and let us know when we've reached our limit for the day.  The nurses are exposed to radiation all the time, so they get less time in the room than we do.  After exiting her room we have to use a Geiger counter to see if anything is contaminated.  It's a terribly interesting process, it it wasn't for the fact that it's my daughter on the other side of the lead wall.

So far Madeleine has been handling the isolation part of this very well.  And technically she's not very isolated.  We can hear and see her (through the mirror), and she's really not all that far away.  She has a lot of things to keep her occupied - movies, coloring and art things, some toys, and my old Kindle Fire that was given to her for this purpose loaded with shows, music, and apps.  Now we just need to get through the next few days.  Every day the radiation levels will be measured, and every day we will be able to be in the room more and more.


Siobhan N said...

Glad this is going okay for you! Best wishes to Mad and you guys. And now that you've got the little pro, will she give us a run-down on the most amusing apps and entertainment?

Adelaide and Harleigh Morris said...

Mad wins the Princess Patience crown!