Home!

Home has never felt so good.  Seriously.  Our home is clean, because an anonymous friend came to clean it.  Bryce has clean sheets to lay in, because another friend said they love to come home to clean sheets and wanted to do something helpful.   Both friends don't know what it means it us.  it's a LOT

We heard sometime before 8:45 this morning that everyone had cleared him to come home except for the Neurology team.  So we waited.

and waited.
Lunch came.  I ate some of the snacks and food that friends had brought us, so that didn't have to travel home with us.

and waited.

************crickets************

and waited..........

7 hours later, I flipped my lid.  I cussed at everyone I could find.  I started packing our bags.  We were leaving.  I told Bryce and our favorite nurse that this wasn't prison.  I didn't need anyone's permission to take him home.  The nurse tried to do everything he could to get us to stay.  He saw me packing and told me that he was calling them to TELL THEM "she's packing."

And I did.  I loaded up the first load that I could carry down to the car myself while Nurse Marc made the phone call.  When I got back up there to take the 2nd load, I was informed that we were miraculously getting discharged.  We never did see THOSE doctors.  I think they were too scared they'd get an ear full.  And they would have!

Anyways... that's behind us.  My guy is home and showering in his own home.  He will smell like his own soap when he's out of that clean shower.  He can sleep in his own bed that has fresh sheets on it.

SOOOOOOooooooooooOO......  some have asked about the unicorn theme.  I give to you the origin:
bastobb.blogspot.com/2014/05/heres-deal.html
I didn't have a blog, but Bryce had already started his.  This was during the surgery in May of 2014.  I was the guest writer to keep people informed during the process.  Please take note of the last photo in that blog.  Bryce was in love.  Actually.... here it is again in all its glory

I mean LOOK AT IT!!!!!!!!!!!!!!
The majestic unicorn exhaling flames and has lasers for eyes?!  And then the kitty!!!!!  Wearing a bandanna holding a golden gun?!  COME ON!!!!!!  It doesn't get better than this!!!!!

So Bryce found it when he caught up on all of the guest writing I had done on his blog, and the love of unicorns was born.  We now firmly believe that the unicorn is Bryce's spirit animal.

So there you have it.  We're home.  As for the giant unicorn we received at the hospital, we might be calling him Champ.  More on that another day.  Tonight, we rest.  at home :)

B's Hospital Stay~Day 4

NOW WE'RE GETTING SOMEWHERE!!!
I think one of my biggest fears in all of this is that we were going to be sent home without any answers.  Bryce's biggest fear hit him hard again last night.  That's when it always hits him.  He's afraid to go to sleep, because he thinks he isn't going to wake up.  He told me again last night "I think that this is just it."  Well, I just KNOW that it isn't!!!!  So, back to me and my fears :D

I want to know what this is and why it's happening.  I thought it was a seizures.  They hooked him up to an EEG for 30 minutes, but nothing happened during that time.  Yesterday, they hooked him up for 24 hours.  As much of a pain as that is, we needed this episode to happen while he was being monitored on the EEG.  And as much as he hates these episodes, we're fortunate that he had another one this morning while he was hooked up.

ANSWERS:
GOOD NEWS!!!!!  He doesn't appear to be having any seizures.  This appears to be what is called a vasovagal (vay-zoh-VAY-gul) response, or VVR.  There is a nerve (I think it's called the vasovagel nerve, too) that runs along where your carotid artery is and acts as your fight or flight nerve.  If you see blood and pass out, it's because of this nerve.  This nerve can drop your blood pressure FAST!  And THAT'S why he passes out.  His blood pressure drops.

Really technical drawing of Carotid thingies.

Another side effect of the VVR is sweat.  You know how when people fight for their lives or are very scared in a situation and they become stressed, they actually stink differently.  Stress sweat smells different.... worse, to be honest.  My husband doesn't ever stink to me.  Even if he feels like he's gross, he doesn't stink.  That or I just like his stink. :)

Another thing is the body will "bear down" during the VVR.  Some equate it to trying to poop.  Some people when frightened WILL poop.  Others puke.  That's why Bryce feels nauseous.  THAT is what I actually saw that made me think he was having a seizure.  The "convulsions" were actually his body's reaction to the VVR.

CAUSES:
His tumor is literally califlowering out of his neck.  It's grown.  a.LOT! very quickly.  There is tissue between the tumor and his carotid.  However, the CT of his neck shows that there is 33% compression of his carotid.  No one is actually very worried about that, as odd as that sounds.  There are other pathways to help with all of this.  If it gets pinched off completely, but slowly over time, it may not be an issue at all.  Weird.

Additionally, he has sever muscle cramps through his neck/shoulders/chin.  This has been happening since the first round of radiation back in 2013.  Then he was hit again with it in 2014.  Two summers in a row of being cooked from the inside out has its side effects.  Cramps are one of them.  His are pretty horrible.  With that all said, what we THINK is happening is that carotid and nerve are getting pretty tight in there because of this @$$hole tumor.  Then he gets a cramp and may not even realize he's cramping in a weird way.  BOOM!  Cramp sets off a VVR and it's man down.

SOLUTIONS:

Thank you San Fran Crew!!!

We're supposed to see an Electro Physiologist.  This is a cardiologist (heart guy) that is very specialized in his field.  We'll be here another night while the EP and the Neuro discuss and figure out the best way to treat him.  Lord knows, we can't have Bryce falling out all of the time.  NO THANKS!!!

I think that's going to be about it for today.  Sometime around 3:00, they'll take the electrodes off of Bryce's head when the 24 hours is up for the EEG.  He wants a shower.  Then we're going to see our boys today!!!!!!  MiMi is going to pull them out early so we can spend some time with them in Bryce's room.  Bryce's sister will come up again tonight and sit with him, while I go have dinner with my little guys.

The outpouring of love and support is astounding.  My response time today is bad.  I'm just starting to wear down.  There's been a lot of activity, and we're finally getting somewhere, but I'm tired and starting to crack.  I need to see my boys today.  I need to drink more water.  I need to leave the room more.  I know all of these things, but that doesn't make me do anything about it.  At least I will get 1 out of 3 today.  So know that I love you.  I hope I'll get to respond eventually.

Hospital Stay~Day 3

I guess I jinxed it.  I updated while Bryce was in an MRI last night thinking that'd be it for the night.

WRONG!

As soon as his wheelchair was in front of the door to his room, I knew he'd had another one.  The cold rag over his head and eyes.  The slumped way he sat in the chair.  These things take a toll on him so bad.  He's totally wiped afterwards.

The way I hear it, he was in the MRI and doing OK, which is good.  He HATES MRI's because he has to lay flat and be still.  That's difficult for him, because he feels like he's choking.  After all of the surgeries, he is always on a bit of an incline. So yeah.... MRI's suck for him, but he was doing ok.  They pulled him out and gave him the contrast through the IV so they could put him back in.  He immediately started to feel it happening again.  He fought through it so they could get the MRI.  But when they pulled him out, it happened again.

A little information on what's happening when "they" happen.  Actually, I'm going to call them seizures.
1)  I have believed that from the first time I saw it on Monday.
2)  The doctors are now starting to say that's what they think it is, too.

So info on that.  He starts to feel nauseous.  He also gets a headache that starts coming in behind is left eye.  He KNOWS when they're about to hit when things start to go blurry.  Once he is out, his pupils dilate, there's weird and varied twitching, his diagram constricts like his trying to throw up, and sweat.  Not normal sweat.  Literally, head to toe, instantaneous, POOLS of sweat!!

Now we know that he's had 3 full seizures where he is unconscious.  The one at Texas Oncology right after the infusion.  The one as soon as we got to the ER here at Seton.  Then last night, just after they gave him the IV contrast for the MRI.  There have been a couple/few other instances when he feels the symptoms, but they fade and go away.

The list of tests:  blood cultures, an exam to check for internal bleeding, a CT of the head, MRI of the head, EEG, EKG, Echo-cardiogram
WHEW!
Next up for today...... a CT of the carotids/neck

This means they're going to give him the contrast again.  I'm a little nervous about how this is going to go.  However, Bryce and I both really want this test done.  The restriction of his left carotid artery is what he fears the most.  They also have this doppler / Echo-cardiogram like test that can be done in that area.  B-U-T, that's where his tumor is and they aren't sure that the ultrasound handle thingy will even work.  So, they haven't ordered it for him.

We saw Dr. Y, his oncologist and head of the trial, again this morning to discuss a few things.  We wanted to know if all of this is going to kick him out of the trial.  So far, he's good to stay in.  They started him on seizure medication last night.  They verified that it don't have any adverse reactions to the Keytruda that he's on right now.  All tests have been normal thus far.  Now..... he was only hooked up to the EEG for 30 minutes.  During that time he didn't have a seizure.  Soooo..... I feel like that was a waste of electrodes, but what do I know?!  We talked to him about the seizures happening when he gets injections of something.  That brought up something interesting.  The stuff in whatever injection takes up real estate in the blood/veins.  If he already has restricted blood flow (which isn't confirmed), is he not getting enough oxygen or blood to his brain?  Maybe so.  It's a point of interest.

I think that's about it.  I know the last couple of updates were hurried and in some ways vague.  This is a more complete idea of what's going on.  It looks like he'll be here another night.  Again, thank you to EVERYONE for all of the love, support and prayers being sent out way.  If you have sent me a message and I haven't responded, know that I still appreciate it.  If you feel like I've been short with you, I'm sorry.  Things can just get hectic at times in here.

And your daily dose of fun is brought to you by our friend, Marie
Unicorn Name Generator Fun/

B's Hospital Stay~Day 2

I'd like to start by saying thank you very much for all of the well wishes and prayers that have been sent our way.  And special thank you's to our friends and family that have been taking care of our kiddos, bringing us supplies and supplying us with company.

Here's the update and a little more about what has been happening.  Sunday morning, Bryce got out of bed just after 4:00 and passed out.  He hit the floor.  Actually, the metal trash can broke his fall.  So, he gained a nice gash on the back of his head from that.  Monday morning (yesterday), we got him up and ready, dropped kiddos off at school and headed to Texas Oncology for Cycle #2 of Keytruda, his trial drug.  He is in the 1st arm of the trial.  Keytruda isn't THAT experimental.  It is FDA approved for use with Melanoma and they have been trying it out on lots of other cancers, as well.  The trial drug is actually something else that he can get if things get worse.  Anyways, we talked to the doctor extensively about fears and realities.  Bryce lives with fear every single day that he will not wake up.  I have told him to pray and cling to the hope that he'll make it to Monday.  We told Dr. Y that we have no desire to be given a timeline for Bryce.  However, I needed for him to have some piece of mind.  "Will he make it 21 more days to come see you again for Cycle #3?"  He said that is a very attainable goal and looks forward to seeing us then.

Bryce was hooked up to his infusion and he didn't feel right.  The feeling would come and go.  He kept saying that he felt nauseous, and that's very weird because Keytruda isn't a kill everything kind of drug.  It's an immunotherapy.  He shouldn't be feeling THAT bad.  Anyhow, he got through it and was disconnected.  He walked to the lobby and he said he needed to sit down because he didn't feel right.  That's when it happened.  I thought it was a seizure, but I haven't really seen one before.  He was definitely unconscious, but had his eyes open for it.  The nurses and doctors called 911 and we took a ride to Seton Main.  It's only about 7 minutes away.  They were still working on hooking him up when it happened again.  I can give all the gory details of it another time.  Today's issue is What's Wrong With Bryce?!

Since we arrived yesterday, he's had an EKG, CT of the head, Echo-cardiogram, EEG and he's currently getting an MRI of the head.  They've taken blood for cultures and other tests.  They've checked his blood pressure laying, sitting and standing.  They checked him for internal bleeding.  So far, they see nothing.  Heart is fine, CT shows nothing,  EEG is normal.  He was not dehydrated.  He's eating enough, even though he has experienced a loss of appetite.  We just talked to the neurologist about an hour ago.  She said the description of it sounds like a seizure, but we do not know why it's happening.  Keytruda isn't known to do this.  Maybe it's because he hit his head Sunday when he passed out?  Hopefully, this MRI of the head will shed some light on things.  I think tht's the last test they can run for him.  Honestly, it feels like they've run every test possible

For now, we know nothing.  To hear that there's nothing wrong with him is nice, but he still doesn't feel right at times.  So there's nothing wrong, but there is?  I wish we had answers, but we may not get them.  They have started him on a seizure medication.  Hopefully, we get to take him home tomorrow, but we don't know that for sure.  We're both really tired tonight.  Once he gets back from the MRI, he's planning on eating and showering.  Then I think we're both going to crash pretty hard.

Again..... thank you so much for the love, support, well wishes and prayers.  I leave you all with a picture of our newest addition to Bryce's unicorn collection.  I'm still trying to name this big, beautiful bundle of joy.  Any ideas?

Bryce's Bad Day

Hello to All,
This will be brief, because I'm tired.  Today was exciting, but not in a good way.  Bryce went in for his next cycle of Keytruda.  As soon as he was disconnected and walking away, he needed to sit down in the lobby.  He didn't feel right.  He sat there for a few minutes and when I knelt in front of him he kept saying he was going to throw up.  Then boom, we was out.  I don't know if he just passed out or if he had a seizure.  The whole thing felt like forever, but was probably just a minute or two.

So, we're at the hospital now.  He was taken by ambulance.  His sister and our friend, Keith, were there to witness the whole thing.  Shortly after, his parents arrived.  They just happened to be pulling in town so that they can help us with a few things.  Right after we got to the ER, it happened again.  Not AS bad, but it happened again.

The boys are with some friends, so that his parents can come back to see him in the morning.  Keith is bringing us some clothes for the night.

I'll keep you all posted.  For tonight, we rest as much as possible.  Tomorrow, we hopefully get some answers to what is happening.