Being patient patients and advocates all at once

Administering IV meds...no sweat!

This morning we had another appointment at the CHOC Cancer Clinic to get Carter’s blood work done. The doctors also wanted to do their weekly check-up on Carter. The thing we have learned to be patient about is being treated at a teaching hospital, when there are 7 rotating oncologists and several residences and fellows. We have definitely gotten to know all seven of the oncologists, some we see more often than others. We do feel like we are constantly repeating ourselves with Carter’s chemo side effects and the transplant process at UCLA. You would think most of this would be noted in his chart and maybe it is, but we have the same conversations with each of the doctors we meet. And sometimes we’ll get different feedback from each of the doctors (like whether to continue G-CSF, etc). We always point it out and hope they can re-group and come back to us with a concrete conclusion. And on top of all this, we have to make sure two different hospitals are communicating as well. Finally, after almost a month the CHOC doctors have received a copy of the MRI taken at UCLA. We were following up on both sides constantly, and there is only so much we can do.

After the doctors took a look at Carter, it was time for blood to be drawn. For some reason, the nurse was not able to pull blood from either lumen in Carter’s central IV line. This happened once before early on in his treatment. They end up having to call the hospital pharmacy to get this medicine that eats away at any clogs in the line. Well, the medicine takes 30 minutes to receive, and then you have to let it sit in the line for 30-60 minutes. Today it was on the latter end. Therefore, a 20 minute appointment turned into 3 hours. Thankfully, Grammy was able to come save the day as I had to run off to an appointment. And finally, they were able to pull blood. We’ll find out tomorrow, but hopefully all Carter’s counts are still up. He is acting great with tons of energy, so I would imagine they would be. The bags are now in the car, and we are just hoping that liver transplant call comes soon!