This has been one rough stinking day. First of all her port got dislodged during chemo and Cisplatin was running out from under her tegaderm all over her body and April's. You should of seen the nurses scrambling. Putting on their gowns and masks and getting out the Chemo spill kit. We rushed Ashley to the bath and washed her off. The IV team came and I pulled her tegaderm and her port out. The needle flipping around trying to make sure nobody got pricked. Then the attending said that we didn't have any heparin in her port and it would clog if we didn't access it right away. So no time for any numbing agent. Just have to put that big needle into Ashley's chest without anything. She screamed, we cried.
Then we were out side and one of her IV lines comes undone. Have to redo all of the tubing.
But this is the big one that really scares me. Her AFP is climbing. It was 7.3. Anything under 12 is normal. It is now 13.9. No doctors around to really tell us anything till we retest tomorrow. I can tell once we got the labs that the nurse didn't want to say anything so she called the fellow. The fellow had to call the attending but it was 8:00pm. This is what I have feared the most. Who would ever think that 1.9 over normal would bring us back to the feeling in the first week. I hope to god it is some kind of margin of error thing but we don't know. It basically doubled. I hope that she isn't chemo resistant.
IF THERE ARE ANY SURVIVORS OF HEPATOBLASTOMA THAT ARE READING THIS AND HAVE HAD SIMILAR EXPERIENCES PLEASE POST ON THIS SITE. WE ARE SCARED AGAIN AND IT SUCKS.
Ashley is still awake, the dexamethasone if keeping her awake and she seems like she is going to vomit.