This week has already gone much harder than expected. The vomiting began last night before bed and she was still dry heaving when we arrived for more of this toxic wonder drug today. When we arrived the protein levels in her urine were too high to begin chemo so we had to wait hours to begin before they dropped. Chemo can cause cystic hemorrhaging in your kidneys, so they monitor the levels very closely.
We met with our Stem Cell Coordinator this morning who went over the daily shots we will begin giving her at home at the the end of this week. They’ll help her counts rise to their peak level in time for her harvest admit on the 13th. She also began to go into detail about the Stem Cell Transplant itself, which will probably be the most difficult piece of this treatment. It’s when will stay here at least a month waiting for her body to recover.
In about an hour they’ll place the feeding tube in her nose, down her throat and into her stomach. I guess I had assumed they would sedate kids for something like that, but unfortunately it’s not the case. They simply restrain them. It’s held in place by a single piece of tape on the side of her face. All morning I’ve been versed in the appropriate steps to follow if and when she rips it out at home.
Later today we’ll start giving her meds through the tube and tomorrow we’ll begin the feeds. Her feeds will run through a pump overnight for 12 hours. As with a newborn we’ll get up every four hours to change the bag. With each additional round of chemo we’ll decrease the amount of formula she’s receiving. There’s no point giving it to her only for her to throw it back up.
It’s hard to believe that only eight days ago she had hair. Only eight days ago, and today I’ll leave with someone practically unrecognizable. Bald with a tube hanging out of her nose taped across the side of her face. Tape that has been eating away her skin. When they changed her central line dressing yesterday the entire site was completely red and at the outskirts of where it had been was raw, bloody skin. Your gut tells you just to leave the dressing off a while so it can breath, but you can’t let the site stay open for more than a couple minutes. Even then everyone in the room has to where a mask to prevent infection. They covered it back up immediately, but this time with something hypo-allergenic. Hopefully that will help.
I won’t pretend that every day I feel strong and hopeful. The past 24 hours have been some of the hardest yet and they continue to paint a picture for me that gets more and more grim. I anticipate the week getting harder with a tube down her throat. I’m told it takes days for kids to get used to that sensation.
This is usually the part of my blog where I throw in something adorable she said, something encouraging I’ve read, or a promise from the Lord I know I can fall back on. But I don’t have any of that in me today.