Week 11/12 - The infusions

Now we're informed that the tests are OK, he's in. So off we go to Dallas, get a room at a Marriott some 400 yards from the RIoD, ready to start 2 weeks of treatment. There will be a blood draw in the morning most of the days, to get a starting value and to monitor blood indicators to ensure that there's no harm to the patient; then, the infusion in the afternoon with an IV with the drug for half an hour, and saline solution for the next half, so to flush the line.

1) The catch. Like in every clinical trial, some will get the drug, some will get a placebo. The latter are called control group, and are used to compare the effect of the drug against a patient that does not get it. Well, here we'll have to take some chances. There's no way to know what you get in the random draw. Will he get it? Will he not? OK, some people, not all, have some reactions that will tell from a mile away that they got the drug. Some other might not. Time will tell. It is most unfortunate that we'll have to live with that surprise.

2) The needles. Fortunately, the lab tech that will make the draw -and everyone we are meeting here- she gets to make great friends with the boy, which makes the pricking not such a bad thing for him. On the other hand we are using a numbing cream -after a while we've learned that the cream needs some 60 minutes to make effect against the 45 that say in the box-, so the draws and infusions don't go that bad. Not a picnic, but not that bad either.
However, by the 7th day, there are no more veins left in decent shape. We think of using a pick line (like a fixed tube that goes deep into the vein -but I'm not too hot on that as the boy moves a lot and this needs a lot of care to last several days, and you need to go to the hospital to get it in); or to use a catheter, a plastic tube that also goes in to the vein, not as deep, but lasts only 1 to 3 days. But even so, that'll give a bit of rest to some of the veins, and will avoid the everyday pricking. I personally think that's the best solution, way less traumatic than the line.
That we do, though it requires a bit of work once is in (like flushing the catheter with saline solution every 2 hours, with the utmost cleanliness and care so not to build up pressure when flushing. The pressure buildup is painful for the patient and indicates that the catheter is clogged, so we are not to try to unclog it). Mom takes the day shift, dad the night shift. With that, we manage to finish the infusions with way less pricking in the arms, which made the last days more rested than the first ones, and gave the veins a chance to recover.

3) What's next. After the first set of infusions, there's a second set in 6 months time (that'll be end of December), and meanwhile we'll have to visit the RIoD every 1-2 months to get a blood draw, as it is required by the trial's protocol.
For the next set, we'll see to go straight with the catheter. OK, you have to do some work with the flushing, but you don't have to see the boy being pricked everyday. Again, nurses, lab tech, and all the personnel were wonderful -and wonderful is an understatement- doing this, cheering up the boy, doing the procedure with the utmost care. But this was day after day after day after day after day... I think that the catheter will save these gymnastics in the next visit.