Okay, so it goes like this. If you follow our little blogosphere here, you would know that the initial plan of harvesting Emmah coming off her "low dose" chemo wasn't enough to get her stem cells mobilized. What that meant in terms of treatment was that she would have to receive an infusion of "high dose" chemo. That was to be done on the 16th... Thursday.
When we last spoke with the stem cell team (SCT) on Monday the 13th, we were told to come in on the 16th and that someone would call us with a time to come in. Thursday morning dawns and we have no idea when to come in. So Julie had some questions to ask the SCT and so had put in a call. Upon receiving the return call, we were told to be there @1pm... we received this information a little before noon, so Julie said that we wouldn't be able to make it by 1 so they said try to make no later than 2 if possible. So Julie cut her work day short and came home so we (Emmah and I) could head on in. We arrived @ 2:05.
So we went to the SPA... special procedures area... and they started her on fluids, but we couldn't go over because we were waiting on a bed. I should clear something up that isn't obvious to everyone. Where we've been going to this point is in a different building than Comer, we had a bed at the SPA, they just didn't have one ready at Comer. Hence the waiting... And waiting... And waiting... And waiting... AND waiting. We finally got into our room @ 6:35... 25 minutes before room service stopped serving food. So Emmah quickly got on the phone to get her order in. She ate and we watched some movies.
I gotta say, the rooms there at Comer's are pretty choice. I won't go in to great detail other than to say that we contemplated asking if we could stay if we paid rent. Then there was more waiting... and more waiting and... you get the idea.
Not that we were excited to be getting this unexpected/unplanned high dose of chemo, but at the same time, you kinda want to get it started. The faster it starts, the faster it ends. Finally at 11pm the chemo is here ...yippee... and so it begins.
Along with this type of chemo agent (Cytoxan... which she's had before) there is another medicine Mesna. Cytoxan is hard on, among other things, her bladder and what the Mesna does is help protect her bladder. The Mesna goes for 12 hours (or something like that) after the infusion of Cytoxan is over... not continuously for 12 hours, but a bag like every three hours or something like that... her first dose being in with the Cytoxan. So they set her up for the two hour infusion and get'er goin'.
About 30 minutes in... she's complaining that her nose is bothering her and it's looking rather red and it sounds like she's getting a tad congested. We call the nurse... she calls the doc on the floor and the doctor sez no more monkeys jumping on the bed. Okay, so not really. We end up stopping the infusion so she can get some Benadryl. Once that's done we start 'er back up. By the time it was all said and done, it wasn't until 1:30am that the chemo was over.
I'm always happy when the chemo is over. It's that sense of relief... like that feeling you get when you have a sliver/splinter and you finally get it out... that huge AHHHHH that's better feeling... it's kinda like that.
The only real stumbling block she had was her having to use her pink puke tub once... that's a huge change from all the chemo she got in the beginning during her front line treatment. That and it seemed obvious that she's having some type of reaction to the Cytoxan because in addition to the nose, her mouth was "feeling weird", her face was a little puffy and I noticed that she had Angelina Jolie lips going on... hot if you dig Angelina, not so hot if it's your daughter "sippin" on chemo. Nothing major came of it and the reaction faded as time marched into Friday afternoon. Upon questioning, we were told that the pharmacist said that reaction was indeed from the Cytoxan.
Now that neither of us got any sleep Thursday night into Friday morning, Friday was spent getting her the rest of her Mesna and trying to catch up on some sleeping. Oh, and Emmah needed her port needle changed.
Dundundun!
Her PP port... problematic power port. I will say that since getting her new port... the power port... there's been very limited success (outside of Hope) getting successful sticks.
Let's go back a few weeks... you might remember this posting and the trauma surrounding the accessing of her port. So after that little episode it was power port 3... nurses 1... Kelly being the only one to get it. Then came our home care nurse... power port 4... nurses 1. So since the home nurse missed too and we already had an appointment to go in, they got another chance to access Emmah. Emmah asked for Kelly and so it was power port 4 nurses 2, but I don't know if you can really count that because Kelly had already proven that she can get it... so I'm sticking with 4-1 here. There was yet another time that Emmah was in and needed accessing, but this time Kelly wasn't there.
Dundundun!
Okay they say... Dr. Rudinsky is really good at accessing ports. I'm thinking each and every nurse said (almost verbatim) the same thing... I never have any trouble and I've been doing this for 20 years.
HA... you don't know THIS port!
So Dr. Rudinsky comes in... swing and a miss... strike one. 5-1. Swing and a miss again... strike two. Swing and a HR... we're in. Okay then... even though it took three pokes... I have to make it 5-2.
Now comes yesterday afternoon... our nurse is getting ready. The port's reputation precedes it. I don't know if this spooked her or not, but she assured us that she too has no trouble getting ports. Swing and nope... 6-2. She tries again... nope. Luckily Dr. Rudinsky is still around and she comes in and it's a one and done. 25 % success rate isn't very impressive... but at least we have two to choose from now.
Okay, so port needle is changed and that means that we're good for another 7 days. Let's continue resting and hope for getting out of here sometime today.
Now they've been taking her temp throughout this whole process... always good... until they're getting ready to release us. She spikes a bit to 38.1... that's 100.6 for the rest of us... the metric impaired. So now there's talk of this development potentially buying us another night at the club. The nurse needs to check with the doctor. I decided to eliminate the middle man, in this case the nurse, and went to talk to the doctor directly. After some conversing with said doctor, it was determined that if I was okay with taking her home with the low grade fever, then she was too. I had explained that whenever Emmah spiked a fever... which wasn't often, but she did have a few of them... that every lab culture that was run came back negative. She allowed her/us to be discharged. We end up getting home somewhere around 10pm and Emmah basically flops on the couch and calls it a night.
Ahhh... Saturday morning... going to be a beautiful day weather wise. Julie informs me at around 7:30 in the morning that Emmah has a fever of 104.3... ZOINKS!
Uh... that's not good...
Okay let's get her uncovered for an hour and see if that changes anything... well it dipped to 102 something and then we took it again and it was 104 again. We call the doc on call and he said to give her Tylenol and call him back in a couple of hours. Okay. Then he calls back and sez come on in to the ER but no on the Tylenol. Luckily we hadn't given her any since we were out (I was about to go and get some)
By the time we got there, her temp had dropped some... I'd have to check the paper work, but I think it was below 101 now. I assured them that she had no Tylenol. They finished getting information and gave us a room. The short of it (unlike this post) is that they...
- Gave her fluids
- Drew labs to run cultures
- Gave her Tylenol
- Made her pee in a cup
- Upon seeing the golden color of her sample, it was evident that she was dehydrated... lab results proved it.
- Initial culture results negative, but won't know full results until Monday, but gave her an antibiotic anyway.
- Knocked her fever down to normal and by the time we were ready to leave after the Tylenol wore off, she was normal.
- Preliminary results were showing a possible UTI, but they weren't certain and they prescribed a precautionary antibiotic anyway.
All I have to say is I hope that this extra chemo (to mobilize her stem cells) works!
KEIYTAP
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