After having been in the hospital 5 out of the last 6 weekends, Chandler and I decided to try to work the system so that we could have Faith home for a weekend. Selfish...maybe. Good intended for all 4 of us...YES! We did the math and added it all up to equal good numbers that would even allow her to invite some friends to spend the night like we used to do. The 4 of us worked out all of the details over dinner one night last week. Chandler and I would move into Faith's room for the night, since she only had a queen size bed which took up most of her bedroom, and allow Faith and her 3 "besties" to take our room. That way Faith could sleep in a bed, be close to a bathroom and not have to step over anyone to get there. Done! Easy enough!
Since we are getting better at asking for help, we enlisted Uncle Scott, who normally watches Faith on Wednesdays at our home, to take her to her clinical appointment. All he needed to do was get her to the appointment on time, they would draw her blood, get her "numbers", which we were sure would be fine (why wouldn't they be?!?) and then get her over to her assigned room and wait, and wait, and wait for chemo to start. I would go down on my lunch break to sign forms and then back for the evening to stay the night, not missing work. Chemo has NEVER started before 7pm, so why would today be any different? Well, as the old adage goes...what a difference a day can make!!!
I usually take her on Thursdays, a full 2 weeks after her last chemo began. This was a whole day earlier, and she had that little cold that landed us in isolation the weekend prior. Poor Uncle Scott, who was already a bit sleep deprived and, I'm sure, a little wigged out about the role he was playing, had to call me to tell me that her platelets were low. 69, to be exact, and they are supposed to be 75 to allow chemo to be administered. The doctor, whom we have never met as ours is on maternity leave (which baffles me how a pediatric oncologist can have the courage to have a baby knowing what she knows...squirrel...sorry!) tells my brother that we can force the admission and continue with chemo, but it will most likely set her back significantly next time since her body won't be able to recover as well from this one. Hmmmm, tough parental moment. THIS was not part of the plan. THIS is really going to screw things up. THIS is not good. Ok, think...what should I do! I start yelling at myself in my head about how stupid and selfish we were. Why did we send my brother?!? This isn't his responsibility. It should be us with her making these choices. STOP IT! I have to physically shake my head to revisit reality. OK, I am back. I tell my brother to go with the doctors recommendation (even though in my head I am still saying 6 platelets short. Really? 6. I'm sure. Like that is REALLY going to make a difference). I wouldn't be able to forgive myself if I decided to push it and then she got really sick.
So, we waited, and on Friday the 13th I took her back to the clinic to redraw her blood and check for an additional 6 platelets (I know it's not really just 6). I am a betting girl by nature, so my money was on those 6 and I was taking the over. My bag was packed and I was calculating that if they started by 7pm, we could still be home by Sunday night at bedtime. No harm no foul. Chandler and I would each take a night at the hospital and we would all be back under one roof in time for the week to begin anew. Right?!?
The clinical nurse couldn't get her port to return blood, again. This happened last week. So, after much deliberation, we convince Faith, AGAIN, to let the nurse stick her in her arm to get blood. Well, the nurse is struggling to get blood from there, too. So, the sample of Faith's blood that was ultimately used, after being compiled from multiple sources and viles had a little clot in it that rendered a platelet count of 74. 1 short of our goal. Not to worry, our nurse assured us that this was a false low number because of the clot and we would press on with chemo. Whew!!! What a relief, which is still so weird and unsettling to me the level of enthusiasm we have for essentially poisoning our daughter.
We get Faith admitted to the hospital, which took longer that usual since a baby had spilled his sippy cup all over one of the admission computers totally shorting it out, thank you Friday the 13th! We make our way up to our room to have a pre-arranged fun lunch date with some friends. I mention to the nurse that we are having trouble with the port and that we are supposed to be taking an x-ray first to determine the source of the repeated problems. She inspects the port and tests it out, declaring it slow, but usable. Ok, fine, what do I know?!? I get her the chemo papers I've been instructed to give her, after I remembered that I had them, and assume we are moving forward. My expectation is a start around 7pm. 8 o'clock comes and I page the nurse, who's just come on shift, to inquire as to the status of when we will commence the 3rd round. She is unsure since Faith's platelet count is not sufficient to begin chemo and no x-ray has been taken of her port. What?!? Are you %$*@!^$ kidding me? What have we been doing since noon today? No answer, crickets. The nurse cannot understand why the day shift didn't handle these issues, but we truly cannot start without some answers from the on-call doc. Apparently, false low counts or real low counts require a special, specific note from the oncologist giving permission to break protocol and we didn't have that. Great! Oh, and Faith is still on isolation since the cold virus she tested positive for last week can linger for a month. Well, that's just great! NOT! We essentially toured the entire hospital while we were waiting, so I'm kinda thinkin' it's a little late, but rules are rules and my sassy, pissed off attitude isn't going to change protocol. At least this nurse, and now the charge nurse, are going to get to the bottom of it so we can get started and they do to the tune of 2:30am. Yep! That's when Faith finally started round 3. We got to the clinic at 8:45am on Friday the 13th and began chemo at 2:30am on the 14th. Well, it's a 48hour drip, so you do the math. I sit here at my computer at home with half a family under my roof while the other half is 30+ miles away still "drippin" as Chandler likes to call it.
Lesson learned. LESSON LEARED!!! I got it. Be polite, be nice, but be firm and be in charge. We have had such wonderful experiences up until this weekend that I became complacent, more so than I usually am. But we are the ones who have to watch out for Faith. The nurses and doctors are human and have many children to look after. It was Friday. It was the 13th. BAD, bad combination, if you ask me. I should have insisted that the day nurse call down to confirm the need to dismiss of the port x-ray. I should have said, "hey, the platelet count is only 74, but her doc said to continue on". But, we don't know what we don't know, but now we know!