Phenon Updates

As is common with chemotherapy patients, Phenon is back for a brief stay in the hospital. She had a low grade fever for an hour and that means back for tests to see if she has an infection; An obvious side effect of treatments that weaken your immune system.

Best case scenario is she gets some antibiotics and comes home tonight.  Less best is a night or two in the hospital while they get things under control.

Julie took the her down to Children’s a couple of house ago and I’ll update again when I hear what’s going on. 

Today Phenon and I went down to the hospital early so that she could get a dose of etoposide phosphate to make up for the etoposide (not phosphate) that she had the allergic reaction to and, therefore, did not actually get.  Things could really not have gone more smoothly. We got down there in good time and didn’t wait more than fifteen minutes before they called us back.  Totally different than yesterday’s debacle.

I joked that I was just charmed.  A joke that Julie found less than funny after she drove down later in the afternoon to pick up a prescription that we had to have today that never showed.  She waited an hour or so after they said it would be there and then drove home while the hospital pharmacy sent someone to our house to hand-deliver the goods.  It was really nice of them, but I’m definitely done commenting about how smooth the morning was.  Or suggesting that I’m somehow just lucky.

Mostly what Phenon did today was sleep.  She slept while the chemo was administered and then again after we got home for more than three hours until Julie got home.  Then she woke up, vomited for a while and we had a nice family dinner and watched Glee.  We all agreed that this latest episode was not very good but that it was very interesing how teenagers all seem to go through the same things at the same time as each other on Glee.  This was the week when they all decide whether to have sex or not.

Anyway…all-in-all a pretty decent day.  However, Phenon’s stomach is more frequently feeling just BAD, and her mouth has a constant burning sensation that we suspect could possibly be the beginnings of thrush.  Tomorrow Phenon goes to her pediatrician (no hospital!!) for a shot of colony stimulating factor (to promote the growth of new white blood cells), and then it’s just prednisone pills for the next three days until one more half day (well, it’s Julie that’s on duty that day, so half-day, whole-day, in-patient hospitalization, well just have to wait and see) in the clinic for some more of the nasty shit and then NO TREATMENTS FOR 13 DAYS!!!!!!

And then it all starts over again.

Yes, and she was eating pizza while the chemo was going in.

No really…Sneezes. That was her response to today’s re-adminstering of a slightly altered version of the thing that made her body glow beet red and try to stop breathing yesterday. Sneezes. Now don’t get me wrong, there were lots of sneezes for probably about thirty minutes. Then sniffles and some of that “I can tell something is bothering you” kind of stuffed nose sound to her voice for another hour.

But that was it.

Things got off to a late start because the Hospital Pharmacy needed to track down this variant of etoposide that they ended up having in house (yay). And then they had to give Phenon IV Tylenol, Benadryl, Zofran, and Prednisone before the dose of Doxorubicin (which she also had yesterday) and then the dreaded Etoposide (actually Etoposide Phosophate, its water soluble cousin) because, you see, this is the lighter day of treatment. It’s really astonishing to think of the number of medicines that have been pumped into our girl in the last three weeks.

I know things may not stay this way, and the part of this that’s proving to be much harder than we expected is the logistics; the scheduling; the having a life that is not entirely consumed by Phenon’s treatments.  But so far, her reaction to the chemo has been great, and for that we are completely thankful.

Did I mention that our pregnant nurse was not allowed to actually handle this bag of shit?

Here is video of the awesome flash mob that descended on our house on Phenon’s birthday.  Julie described it in an earlier post.  Thanks a million to Ben for getting the sound levels good and posting the video!

I’m back at the office today so this is going to be really short, I just didn’t want another day to go by without some info.

We didn’t update yesterday because it was Phenon’s birthday and we were kind of busy most of the day.  I took her to lunch at school to hang out with a few friends and then we came home and she crashed out for a couple of hours.  There’s also a lot to say about some pretty amazing things that folks did for our girl on her birthday but that, too, will have to wait just a bit.

Julie and Phenon are at the hospital right now doing some Pulmonary function tests in preparation for chemo to start on Monday.  Julie will probably post someting about that this evening.

While I always stand by a good rant (last nights post) this morning restored some good will toward surgeons. Yesterdays surgeon who never got back to us came in early and apologized, told Julie that the x-ray looked much improved, and that the tube would come out today by 10:00am.  I arrived at just before 8:30 and they had already given Phenomenon the goofy meds. Of course it didn’t really kick in until afterward, and P is now having a very entertaining breakfast.  Apparently the cereal is very small.

Taking the tube out was crazy; it looked more like starting a lawnmower than the gentle sliding I thought it would be.  The worst part for P was him taking the tape off that was securing the tube site.  Of everything that happens in hospitals, I think P would say that tape removal is the worst.

Looking forward to a good day of P moving around, increasing her lung capacity, and eating a LOT.  And all signs seem to point to HOME TOMORROW MORNING!!!!

I know that’s probably unfair to say.  I’ll allow that it’s even possible that it might not be true of all surgeons.  Heck, I’ll even accept that there might be dozens of surgeons out there who don’t suck.  It’s possible that some of you reading this may even know or be related to a surgeon, and to you I apologize.  It’s just that I keep waiting for a surgeon to not live up to the negative stereotype that I always see them portrayed as and I keep being disappointed.  You know the one: incredibly skilled but completely unable to talk to people who are not surgeons, and flexing through life with a disregard for human emotion that one can almost taste seeping from their every pore.

I’m incredibly thankful for the work that our surgeon has done for Phenon and I can’t begin to imagine what it takes to be able to cut into another human being and do exactly what you intend and fix shit.  I mean seriously, I can barely figure out how to fix a JavaScript error on a webpage I’m working on and these people can do things that I can’t even imagine.

But there’s this: when you have a 12-year-old girl with a hose coming out of her chest that has been in there for four days longer than it should have been and your team is not completely blameless for that being the case, then you damn well owe it to that girl to let her know what’s going on when you say you will.  When you come in to her room an hour after the 4:00pm x-ray that you ordered has been done and don’t even know it’s been done, and then you tell her and her parents that your team is going to review it and let them know what the result is, then you should call them and tell them.  DO NOT make them wait nearly six hours until they finally break down and ask a nurse to call and find out what’s going on.   AND THEN DO NOT have the only information the nurse is able to get be “the tube stays in tonight…we do another x-ray in the morning.”

Better yet, DON’T DO THIS EVERY SINGLE DAY OVER, AND OVER, AND OVER.  That makes you the kind of person who sucks.  And that is why the character that you are portrayed as on television is a complete dick who nobody likes and who is always lonely.

I really mean it when I say that I hope the surgeons don’t come by Phenon’s room before I get back to the hospital in the morning.  Though they usually are the first team to come around, typically around 6am.  I suspect that they do their rounds so early because they are hoping that the insects that they are visiting are still asleep so they won’t have to answer questions about things that nobody but them could possible be capable of understanding.

So yeah, surgeons suck.

RNs now, on the other hand…don’t get me started on how awesome Nurses are.  We’ll save that post for another day.

I know this is overly harsh, but Julie is already asleep and not available to read this before I post it, so here I go…

We’re still waiting to hear what surgery thinks of the x-rays taken this morning and whether there will be progress toward getting Phenon’s chest tube out soon.  I’m starting to feel like we’ll never get out of here and I know she has got to be feeling the same.

Some morning tears about missing trick-or-treating this year for the first time have settled into what looks like a pretty blue mood. Halloween is a big holiday in our family and spending it in the hospital has really got her feeling down.   Cheering welcome.

I’m sure texts from friends would be especially welcome right now and Phenon is really just focusing on the visits that are set up for today.  I’ll update again when surgery tells us what they see in the x-ray.

Wow!  That was a busy day.  I think Phenon had visitors straight from 11:00am-5:00pm and was completely energized the entire time.  I think she was just showing off when she ate an entire Boca Burger with mustard and kept it down.  Then she ate some Jelly Beans and it was obvious that she was feeling spivy.  Let’s see if we can remember everyone who came through today: there was Griffin, Kelly, Yasna, Manpreet, Aliza, Kyra, MacKenzie, Priscilla (and all of their parents!  Parents were not a minor part of the visit for us, just for Phenon ).  Phenon will correct me if I missed anyone.  It was a madhouse of kids and parents and the Telestrations game brought by Jean yesterday was a huge hit with all the kids.  And me.  I didn’t do well.

The Girls...The Game

After all those visitors the poor dear totally crashed and has been asleep ever since.  A really good day all-in-all.

Only two left

The sad news of the day (what would a day be without a little heartbreak) is that the chest tube will not be coming out today.  In fact she went back on suction instead.  Here’s the process: The chest tube stays on suction until the surgery docs like what they see in the morning x-ray, which basically is that there are no air pockets around Phenon’s lung.  If they like what they see the suction is turned off and the system sealed for about six hours.  If all is still good at that time the tube comes out.  Supposedly 24 hours after that she will be discharged and the next phase of our adventure begins.

This is the third time that she’s had to go from “water seal” back to suction and it feels pretty frustrating to her.  And worst of all, this means Phenon definitely will not be home for Halloween/Julie’s Birthday.  It’s still looking good for being home for her own birthday though, which is nice.

Oh, and I forgot to include this picture yesterday from Bobby, Tania, Fiona, and Kayla’s visit for Julie’s birthday pie.  So here it is now:

Murphys!! In Glasses!!!

The conclusion was reached over the last few hours that the IV in Phenon’s arm was pretty much shot and not delivering her the full dose of Dilaudid which was resulting in her being in considerably more pain than necessary.  This is what started happening when the IV was in her arm right before it blew up like a Popeye arm.  The obvious thing to do was to take it out and put an IV in the new port they installed two days ago.  Everyone was kind of unclear why she had come back from surgery without an IV in the thing that was installed specifically for that purpose that could have been done when she was unconscious.  Why indeed?

So after Jeanne grilled the RN who came in to access the new port about how experienced she was in doing this we went ahead with execution of the plan which was to apply numbing cream and do the stick.  To say that it did not go well would be far from conveying the misery, pain, and fear that would rain on Phenon over the next half hour or so.  The nurse very confidently stuck the needle in the port and it went in wrong, crooked or something.  With Phenon already in tears the Nurse pulled it back out and we went out to the hallway to talk over what to do next.  She said she’d have to try again and I asked her to call someone up from Oncology who does these things all day, every day, to come up and do the second try.  Phenon was a wreck and we were not about to allow the same person to come back in and give it another shot.

Phenon’s idea was that they could just put the IV in when they took out the chest tube because it was already agreed that she would get something when they did that to, in Phenon’s own words “make me loopy.”  Made perfect sense and we proposed this to our Nurse who looked at me a bit funny and asked me to come back out to the hallway.  So began round two…or was it three?

In the hallway, the weekend attending Physician was looking at the latest x-rays and pointed at some stuff that I pretended to see and informed me that the chest tube would not come out today and that Phenon would be going back on suction as well.  So we were going to simply have to do the IV again to be sure that the next 12 hours with the chest tube in would not be as bad as the last four days were.  I passed on Phenon’s idea that we give her something that would make this next try to get an IV in to the port less terrifying and she agreed to order something that would do that.

Round the next.

I went in and told Julie and Phenon all of this and Phenon cried for a bit because she was really, really, really scared about someone trying to put in another IV.  We were sort of in the middle of calming her when the door opened and four people came in, including a nurse from Oncology with a new IV kit.  It broke my heart how big Phenon’s eyes got when she realized that it was going to be so soon.  And again when she agreed, through tears, that they could do it.  The amount of courage she is showing through all this is astonishing.

I turned out that the second stick was pretty quick and not too painful, though the loopy drugs only kicked in about five minutes after it was all over.  But BOY did they kick in.  For the next hour or so Phenon alternated between funny stoner and dozing off.  After all this, and a visit from Lisa, David, and Jake, Phenon said the pain was really not very bad at all and dozed of.  And that’s where she is now.

One bright spot was that her Choir sent a video of them singing “Fireworks” to her that they recorded during a karaoke night-out last night.  It was VERY thoughtful of them and definitely helped to pick up her spirits.  Check it out: