Updates in the Great Stobbma Drama of Winter 2015

Bryce is a neck breather.  He has a hole in his neck where he breathes.  That hole is called a stoma.  Bryce has taken to calling it his Stobbma.

Another quick update because I am at work, but I've had many, many inquiries as to how Bryce is doing.  Sorry for not updating, there just wasn't much to say until Sunday.  Then, we knew he had an appointment with Dr. Y here in Austin today.

Back to the really, really bad infection.  We knew it was there and they ramped up his antibiotics to something stronger last Wednesday.  Bryce slept a LOT last week.  He just didn't feel good.  There wasn't much improvement last week in this thing either.  For a man that can't feel his neck, he was actually in pain.  Things in his chest and shoulder from front to back hurt.  What little bit of his left collar bone is left hurt him to touch it.  He's been emailing daily updates to Dr. P in Houston with gross pictures and all.  Friday his email asked "What do I need to look for that will send me to a hospital?"  It's been kinda scary, to say the least.

Then when he was....  uhmmmm... let's see if I can keep this clean and not gross....  He woke up in the middle of the night after going to bed Friday night and was clearing out some of the infection.  When that happened, he noticed that one of the metal pins/markers came out of this wound.  Makes me wonder if that's what caused this infection all along.  After that came out, this thing started to look better.  Sunday morning, he turned a corner and started to feel better than he had in a week.

Today, he went to see Dr. Y and the results of the culture show staph.  So now we know that much.  While he was there, he started the process of signing up for the clinical trial that Dr. Y will have going.  I don't know much about that yet and I'm sure I'll find out soon.  Right after he was done there, MD Anderson called me to say that they've scheduled the CT guided biopsy for Friday.  He'll have to go down for evaluation Thursday and he will get the biopsy Friday.

I do not know when he'll get the results of that.  We will certainly let everyone know.  In the meantime.....

Be faithful in hope, patient in affliction, faithful in prayer ~Romans 12:12
PRAY! FIGHT!! WIN!!!

I'll take infection for $1000, Alex!

This is going to be blunt, but a LOT has been happening since we learned about a spot on a CT scan 2 weeks ago.

Because they see this thing on a CT scan, they have to confirm that it's cancer cells with a biopsy.  He had an appointment last Wednesday for an ultrasound guided biopsy.  Since we were already going to be in Houston for Thanksgiving the next day, we all loaded up and went to his appointment on the way to my moms house.  We were there for 2 hours, but they never were able to see anything with the ultrasound.  Therefore, no biopsy.  They weren't going to blinded gab a needle into his neck to find a small grape sized tumor that is centimeters away from his carotid artery.

As we were leaving, I looked at Bryce and said "I'm not allowed to get excited about this, am I..... "
He said "No, but it does feel good, huh?"

And it did.  Then, we went to my aunt's house for Thanksgiving.  Saw friends the next day.  Spending time with friends and family felt really good.  But Bryce wasn't himself.  Just laid around a bunch.  We came home Saturday.  Sunday was fine.  Monday, he said that he felt really crummy and had a fever.  He was basically useless all day.  He tried to sleep it off, but he just couldn't shake it.  He fell asleep on the couch, but woke me up at 1:30 in the morning.  TERRIFIED.  He thinks that cancer is breaking the surface near his stoma.  For someone that is a neck breather, having an open wound right next to the area where you breathe is a very scary thing.

I get up with him.  This thing is gross.  I will save you all of the gory details, but believe me when I say Guh-ROSS!  I take pictures and send them to his surgeon and her PA.  Then we try to go back to sleep.  It took a couple of hours, but we managed.  We get the reply from Dr. P and she says what we're scared of.  She thinks that cancer is busting at the seams.  So we got the kids to school and headed for MD Anderson in Houston while her PA was working on getting us appointments.  By the time we got there, things were set.

1:00 - Wound Care - We learned how to keep this thing clean and whatever.  But she tells us what we already knew.  There is infection.  She packs us up some supplies and sends us on our way.
3:00 - Dr. P - She again says that she's afraid that this is cancer coming out of his neck.  She takes a biopsy of the area since we couldn't get one with an ultrasound.  Writes a prescription for antibiotics and pain medicine.  Tells Bryce to start chemo STAT and find a trail to get on ASAP.

We came home kind of in the dumps.  I got the script filled for stuff and he started it that night (Tuesday).  Yesterday, he woke up with this thing looking WAYYYYYYYY less angry.  After just 1 antibiotic.  So I got to thinking.  What if all of this is just an infection.  So I started praying for this specifically.  Then I got to thinking a little more.  Can a really, REALLY bad infection look like a tumor on a CT scan?  So I started praying really, REALLY hard for that.

Yesterday, we get the email from Dr. P that the biopsy shows only inflammation.  Prayer Request #1 has been answered.  It doesn't appear to be cancer crawling out of his body.  So, that's kind of where we are today.  We've emailed her 2 pictures of this nasty thing each morning; yesterday and today.  There hasn't been much change in this thing from yesterday to today.  But it is way better than when it appeared out of nowhere in the middle of the night.  She is going to put him on a stronger antibiotic.  That was called in this morning.  She has told us to hold off on chemo.  Bryce will see his oncologist here in Austin tomorrow morning.  Dr. P is going to call him today to order a culture of this thing.  Meanwhile, she's trying to figure out how to get a biopsy of this spot underneath.

So, here's what I'm praying SOOOOO hard for.  What if..... just WHAT IF..... the spot they see in the CT scan is infection?  What if his cancer isn't there at all?  I can honestly say that I've never prayed for an infection before, but I'm doing it this week.

****Please excuse any typos.  I have thrown this all down with no proof reading so that I can get back to work.****

Cuss Words and Throw Up

Cuss words and throw up basically sum up what's been happening for the last 72 hours.

Bryce had scans yesterday.  Today was results day,  For the first time since he started this journey, I didn't go with him to the results appointment.  That is where a lot of my anxiety stemmed from yesterday.  Today, I boldly went into work with the promise that Bryce would video me in via Google Hangouts.  He did as promised.

I wish I could say that he got another few weeks of reprieve, but that isn't the case.  Six weeks ago we went to  Houston for scans.  Actually..... let me back up to his surgery in May.

In May, they did the major surgery that removed the bone that housed the last tumor.  They removed the top portion of his sternum, some of his collar bones and the first couple of ribs that connected to the portion of the sternum that they removed.  When he came out of surgery, we knew that there were two spots on his trachea that showed cancer.  The cancerous cells were marked with little metal pins so that they could watch them and look closely at his scans.  They were microscopic cells.  Cancer has to be a certain size to show up in a CT scan.  These two spots were so small, they did not show up in his pre-surgical scans.  But we knew that they were there.

He healed up and did GREAT!  He has felt better after this surgery than he has in well over a year.  The first scan was clear.  We went on our amazing road trip of a lifetime.  Then he had the scan six weeks ago that had that place that looked a little fishy that was near one of the markers put in during surgery.  So, there was that.  Then, the scan yesterday.  Today was results day.

So we're back in reality.  The fun vacations are done.  I'm at work while he's at the doctor.  Cancer is happening again.  The fishy spot has turned into a grape.  For all of my throwing up yesterday, and cuss words for... OK.... all of the time..... but none of the throwing up or cuss words got him different results.  It's back.  It sucks.  We weren't blindsided, but it still sucks.

Here are the questions we get a lot of:

• What's the prognosis?
• Our doctors don't really give us that anymore.  He's been terminal for a year and a half. They also told him over a year ago that he could be dead by now.  Here's the deal...... We pray.  God has got this.  He's got Bryce.  He's got me.  He's got the boys.
• Radiation or Surgery?
• Radiation will probably cause his heart to explode because his sternum is missing, but his surgeon will talk to his radiation oncologist (Dr. Cronowski).  The surgeon doesn't feel comfortable with surgery because he has that other marker that could grow AND this is kinda too close to the carotid,  They aren't into allluh THAT.
• Next Steps:
• She's looking into STUFF.  However, we've stayed in touch with his oncologist that is here in Austin at Texas Oncology (Dr. Yorio) that has administered the chemo the last two times up here.  This guy's running a clinical trial that has just started that is specific to Bryce's cancer.  Bryce will go see him on Monday.  Meanwhile, Dr. P will talk to Dr. Y & Dr. Jasani (medical oncologist at MD) to see if this is the best way to go.
• So, there's Monday.  That's been covered.
• He also has to "confirm" that he has cancer with a biopsy.  MD is working on getting him an appointment on Wednesday for that.

Basically, things are in motion.  They've been in constant motion.  It's not that we always expect the worst, but we are starting to get used to how it all works.  And trust me..... we're both over it.  And we continue to pray.  Prayer has been key this week.  We invited Pastor Mike and his wife, Rhonda, over here to pray with us.  We had a really good time talking about LOTS of things.  This was also a chance for us to get to know them.

*Don't worry: I told them that I come with a disclaimer*

And here's the deal: we keep praying.  Bryce needed measurable disease to qualify for this chemo.  Now he has it.  Now we pray that it works.  God has big plans for the Stobb family.  Just you wait and see,.....

You'll see..... you'll all see.....

Community

I haven't written in a very long time.  No news is good news, right?  And that's been pretty true for us.  Bryce feels better than he has in a couple of years.  And we've been so busy with me going back to work and him being our stay at home, I just haven't had time.  But honestly, that's not what this is about today.

Today, I want to talk about our community here in Lago Vista.  A year ago when Bryce got the news about only having a year left, he started thinking a lot about the things he wanted to see and do before his time ended.  Then in the Spring, we knew there would be another surgery and that's when the Go Fund Me page was sent out.  He wrote beautifully about our "situation."  One of the things he wanted to see was Bowen playing in a football game.  One of the coaches of the little league team here saw the Go Fund Me and went to the board to get Bowen on the team.  It was an amazing gesture.  So kind.  From people that didn't even know us.  THAT is what Lago Vista does.

Today, I am amazed by the love and support of this community again.  Bowen's football team played in the Super Bowl.  They made it to the championship.  Our team is comprised of 5th and 6th graders.  The opposing team had a giant that had been held back.  Our 10 to 12 year olds played against a one man show today.  He's 13 and I have no idea how he made the weight requirement.  As angry and nervous as it made me as a mother to let him play this kid, it became another mothers worst nightmare today.

Bowen was the 2nd big hit for the giant.  Bowen was knocked so hard, he flew back a couple of yards and the back of his head slammed into the ground.  I watched the color drain from my baby's face.  I couldn't stand it anymore and I went out to the field to talk to him on the sidelines.  Crying, shaking and dealing with a horrible head ache.  But he was on the side lines and the game just got worse.  It got MUCH worse for another mother.  One of our biggest, strongest, fastest kids was hit cruelly out of bounds by the same monster.

Watching him try to get up twice and go back down was awful... just awful.  Seeing this boys mother knelling at his side while our coaches held the boys dad back from getting to the other side was ripping my heart out.  I know how he felt.  I have never wanted to physically injure a 13 year old as badly as I wanted it today.  I wanted to join forces with this dad and get my hands on someone.  ANYONE.  That kid. His parents.  The other coaches that allowed it.  ANY.ONE.  Watching this boy back boarded and sent to the hospital in an ambulance was terrible to see.  I wanted someone else on the other side to feel hurt and pain too.  Is that the Christian thing to do?  No.... I'm only human.  I tried to get over anger by focusing on praying for our teammate and just hugging Bowen while he cried because of his own head.

All of this is to say how amazing this community is.  Our coaches wanted this monster out of the game.  The other coaches said their giant wouldn't play defense anymore.  Our coaches said that it wasn't worth it.  NO trophy is worth what our boys were dealing with.  Luckily, our teammate is ok.  Checked out in the ER with a closed head injury and no spinal injuries. PRAISE GOD!!!!!

Our boys were crying.  Scared for their friend or in physical pain themselves.  Bowen is fine.  Other players are fine.  We didn't win a trophy.  What we DID win was a real sense of community today.  The people here in Lago were amazing.  People from our church that weren't there and were an hour and a half away already knew about things.  They were texting to find out how Bowen was.  I knew that he was fine.  I knew that the prayers were really needed for the boy headed to the ER.  Prayers were lifted up and God delivered this boy safely at home.

Our coaches taught us today and showed the boys by example that winning a trophy "at all costs" isn't the real way to win.  This community has taught us about love.  They have no reason to love us the way they do, but they do.  And it's a true gift.  Anyone that lives here and is a part of this has been a gift to us.  This community loves.  When when we're filled with anger at someone else, they rally together and love each other.  They go to the hospital to visit their teammate to make sure he's ok.

The community here in Lago Vista is unmatched and very much appreciated.
Thank you for letting us in Lago :)

P.S.  Bowen is fine.  My prayers continue for our #82 that was sent to the ER.  I know you're headed home.  I couldn't be happier.  Get well soon, buddy & TAKE IT EASY!!!!!!!

#BStrong Gear

Many have expressed interest in where to get #BStrong gear.  I will start taking orders and payment now through August 31st.  I'll get the order in the first week of September and should have the product delivered mid-September.

Stobb Family in BStrong t-shirts

Products Available:

Unisex T-Shirts: S-XXL...............$15

Women's Tank Tops: S-XXXL......$15

Koozies........................................$5

11oz Ceramic Coffee Mug.............$8

Both of the shirts and the koozies will be the same #BStrong blue.  The coffee mugs will be white with a blue logo on them.

I have PayPal & can send you requests for payment & receipts that way or accept cash, of course.  All I need is an email address for me to send the request from PayPal.

Pass the word along to anyone you know that follows along and has mentioned wanting some #BStrong stuff!!!!  Commenting on this will work.  However, the best way to send me what you want is by email at jmstobb@gmail.com

Love to you all and KEEP THOSE PRAYERS COMING IN!!!!!!!!!!!!

RESULTS TOMORROW!!!!!

Vacation Ends & Reality Begins

Hello to everyone out there.  If you are facebook friends with myself or the hubz, then you may have seen a picture or two along our epic journey.  It was seriously the road trip of a lifetime.  Stobb Family Tour had many ups and downs.  OK.... me breaking my ankle was the down of the trip and was sort of a game changer.  However, I didn't want to let it stop us from seeing some really, REALLY cool stuff.  My favorite was the entire sate of Idaho & Oregon.  Also Crater Lake, which happens to be in Oregon.

Crater Lake

When we left our home, we knew we wanted to see some people that we rarely get to see.  We had a couple of items on our list:  Dinosaur National Monument, Yellowstone, Giant Redwoods, etc.  What we encountered was SOooooooo much more.  Our plan was to not have a plan.  We'd wake up & decide where we were headed for the day.  Stay off the main highways and run into all the beauty that we possible can.  I feel like that was a success.  We also didn't necessarily mean for it to be a National Park vacation, but the first place we stopped was Capulin Volcano.  Bryce talked to the guy in the visitor center about his disability status.  As a result, he is able to get into National Parks for free.  AJ was REALLY into getting Jr. Ranger badges /patches at each of the parks we went to.  So, it became a thing.  And it was GREAT!!!!!!  Hopefully, Bryce and I will sit down and discuss each route and road we took.  Because I HIGHLY recommend it!  And 2 days after walking in the door, I left with the boys and headed for Houston to visit friends and my parents.

Now..... it was an AWESOME vacation.  We saw amazing things!  But truth be told, we were ready to come home.  It was time.  And even though I longed for home, I'd love to ride that high forever. Thank goodness for memories.  However, reality is starting to settle in again.  Bryce and I are reversing roles in the house again.  And because of the broken ankle, it's happening NOW.  He's cooking.  He's cleaning.  I'm looking for a job.  My job today (& everyday) is to FIND A JOB!!!!  It already feels weird.  I am sitting at the computer applying, updating and uploading while they scurry around me.  This does give me the chance to stay off of the ankle also, but it does feel weird.  I've even received my first rejection email!!!!  I'm on FIRE!!!!!!

The other thing that I'm really struggling with is my own mindset.  Bryce and I go to a counselor who helps us through this cancer stuff.  She's been able to identify for us that living with no stability is hard.  Cancer patients and their families have nothing they can rely on.  Bryce struggles with staying positive, hopeful & fighting for his life, while also preparing for the worst.  We both have thoughts like "is this the last time he sees this person."  He occasionally has thoughts like "is this the last 1st day of school I'm going to be here for."  Bowen is getting to play football this season because Bryce wants to make sure that he gets to watch him at least once.

YES..... we stay positive and fight for him live.
#BStrong
#PrayFightWin
Yes we live life to the fullest.  However, those thoughts do creep in every now and then.

This week, Bowen has started football practice and I will be signing AJ up for martial arts today.  I'm going to log on and search for jobs. The boys are supposed to be cleaning their rooms.  Actually, Bowen's is done.  AJ's will hopefully be clean(ish) by Christmas.  I'm going to try to get out and go swimming a little bit with them.  Unless I get on with a school district, it's my last summer with them.  That's starting to sink in.  But I am trying to stay positive.  I HAVE TO #BSTRONG!!!!

Next week, Bryce gets his next scan,  We'll go to Houston Wednesday night for early morning scans on Thursday.  Then Friday afternoon, Dr. P will give us the news.  We know he has the 2 spots on his trachea.  We just pray that they are dying cells and NOT GROWING!  Everything is up in the air until we talk to her.  Then once we do, we either have a get a plan or we get another 2 months of peace.

Until then........ we just will enjoy this summer.  We made memories that will last us forever.  Looking for our specific prayer requests?
For cancer to just GO AWAY!!!
For me to find a job
For mental and emotional states to remain calm

Love to you all!!!!!

Stobb Family Tour

Hello Friends & Family!  I bet you thought you were lucky enough to not see a blog from us.... not so much!  I'm going to start writing LOTS!
"WHY?!" you ask.  Because we doing super cool stuff & I would like it to be out there for the world to see!

But first, I'll send updates on Bryce.  One of the reasons we haven't blogged lately is because we didn't want to think about the pathology results.  A-N-D we still haven't told the boys.  During surgery there were 2 questionable spots on his trachea.  Whelp, it's officially cancer.  Both are so small that they did not show up on the pre-surgery CT scan.
1)  We pray it's already dead from chemo.
2)  We pray it can't grow through scar tissue.
3)  Pray.  Fight.  Win.

So yeah.... that wasn't what either of us wanted to hear.  But it is what it is.  He will have another scan in August.  We'll work around to talking to our boys about it this month.

In the meantime, we're on an epic roadtrip!  Bryce is officially going on disability.  I'll be the one bringing home the bacon soon enough.  But while we're both jobless, we're going to make some memories & have some fun.
We left this morning and we'll be back August 1st.  I stopped in Lubbock to see Texas Tech.  And we're continuing on to Dalhart where we're sleeping tonight.  It's a lot of miles on day 1, but there won't be too many days like this.

Overall, we're headed to Colorado, Yellowstone, Washington.  Then down the west coast and back to Texas.  Lots of pictures & tidbits are going to be happening while we're on our tour of the wild west!

But for today, we never made it out of our big, beautiful home state.

Post more soon!  Love to you all & thanks to everyone for the love & support you've given us!

P.S.  I did this on my phone & I've been fighting off a migraine all day.  I'm really trying to keep it together & I think I've done ok, but the typing might be off.