Roger Update #???

Roger's Latest Appt

Roger had his follow up appointment at the pulmonary specialist a few weeks ago.  Everything seems to look about the same if not a little better. The doctor is still baffled at the whole thing and has not seen anything like this.  The inflammation is still there and the nodule or spot on his lung looks about the same if not a little less. The doctor is confident that cancer would not follow this pattern and since they biopsied the areas extensively and nothing showed up he feels comfortable not moving forward with an open lung biopsy. We are more than happy to go along with this!

He is saying that whatever weird pneumonia he had basically caused havoc on his lungs and lymph nodes.  The spot on his lung is most likely scar tissue left over and will always be on his lung. A new "fingerprint" on his lungs of sorts.  He said there is no way to tell when the other symptoms will decrease or fully go away. Hopefully, within the next year.  Personally, we do not know for certain that it was indeed pneumonia or some other disease or problem that God as just taken care of. It might sound weird to some but we know that there is power in prayer and there has been some prayer involved on the journey. Only God knows what is going on in those crazy lungs of Rogers and now we trust that He has this.

Words cannot express what I feel when I think about July through November and the procedures and waiting. It's easy to forget the process and simply go back to normal.  When I sing certain songs at church I am quickly taken back to the process of fear and worry and how God worked through that.  He encouraged and allowed us to take one day at a time as we walked through the unknown.  It was not in vain. I am sure that these moments allow us to grow and be better prepared for whatever is next.  That is not to be negative or pessimistic about life but the opposite. Those hard times stink but I am so grateful for them because when they are over I can see God's presence and sovereignty.

Hopefully, this will be the last blog post about Roger! I mean he is cool and all but I need to get back to posting about my babies!

over due roger update

I am sure most have already been filled in on the latest in the DeCoster saga.  I didn't write about the last Dr. apt for a while for personal reasons that I will share at the end. Then I had every intention on recapping but I just got busy and tired.

We went back the pulmonary specialist a week after the last biopsy which showed no new information.  They took another X-Ray and the doctor said he felt like the nodule and inflammation was lessening. Given that all the tests were still coming up negative and that the spots were not growing he was finally ruling out cancer. He said he was going to call it some sort of weird pneumonia and to come back in two months.  He did not offer any kind of treatment at this time except to just wait it out till the next appt and see if there was any improvement. This conversation took all of 5 minutes and we left just kind of dumb founded(or at least I was).  

I struggled driving to pick up the kiddos from church/school with too many emotions to really pin down.  Part of me struggled with guilt. I should be jumping up and down and shouting from the roof tops that cancer didn't seem to be part of our lives as it looked like it was to be.  From what I could  collect from my emotions I really think the stress of the last 2 months came flooding in a wave.  Driving home on I-44 is always a good place to have a flood of emotion.  I hadn't had a choice but to keep going and not dwell on the what ifs or the reality of what might be taking place. 

I struggled with the mix of gratitude of Roger not having cancer and the frustration that he still had a terrible cough and had no energy. If you know Roger he is one that normally has the energy and drive to do anything.  I didn't understand that after everything there was no REAL diagnosis therefore no treatment or promise of relief.

These are the reasons that I was not ready to really share the update.  Inward confusion and lack of faith, hope and trust.  Those are three things that if you are without every situation can look very grim and hopeless.

After hashing some of these emotions out with Roger and working through them the next few days the faith and the hope and the trust started to return.  I ordered some of the specific oils for pneumonia and basically anything wrong with your lungs and airways might help with.   So we are going that route until the next appt to see if there will be any changes.

The reassurance that cancer is not the culprit continues to sober me.  The thought that we could be doing chemo right now is a big reality check.  Grateful does not even begin to describe that emotion.   I am thankful for the stress that this has lifted off of Roger.....ok and me. 

Thank you friends, family and loved ones. Thank you for your support, prayers and encouragement.  I know our storm of the past few months is so small compared to what others have and are going through. Our God is close to the brokenhearted. For that I am thankful.  The DeCoster's are ok. We are more than ok. We have hope in the future. That hope is not based on a healthy lung or normal airways. Trying not to sounds to cliché.... It is the foundation that is our God. He is big no matter what happens in our tiny little lives.  We are looking forward to the next appt to see how God is going to tie this thing up. 

Stephanie

Unexpected Blessing

As most know(especially if you are reading this blog), the past 2 months have been some of the longest months of our lives. I realize I have lived a pretty cushioned life so far but it is what it is.  The blog is to share the good that is in our lives right now. We think we can plan and we sometimes think we can control....and God chuckles.

My friend, Mindy came to the hospital during Roger's second procedure to sit with me. We were talking about the typical topics : kids, how I was handling, crazy hormones of being a girl in general.  I heard these words come out of my silly big mouth...."oh my goodness I am so glad I am not pregnant..I couldn't handle it right now." Granted it was a hard week. Emma started kindergarten and hubby might have cancer so give me a break I was being honest. HAHA.

One week later.... "why are my clothes not fitting...I need to cut out that sugar."  "oh man I do not feel good.... but oh my goodness I need a hamburger like right now." "Why am I crying in Frozen....I have only seen this movie 50 times." oops

Yep! Baby number 4 is on the way! We were shocked, excited, happy, nervous and basically any other emotion ya throw out there we were.  I go next week for an ultrasound but so far everything looks good and we are 9-10 weeks along.  I love the idea of four kids. I am counting on the rumor I hear that 4 is no harder than 3. It was obviously not our timing with Roger's health issues but that is what makes it so exciting.  And have you seen my kids.... I think they are pretty cute and as different as all get out.

I had to share the news publically because I'm pretty sure Emma's school is well informed thanks to her over excitement and once she enters the church building it might as well be in the bulletin.  And because I'm pretty sure I'm going to have to bust out maternity clothes before to long.  So that's where we are!  We like things crazy I suppose.

Roger Update#??

I have to go back and read where I left off on the blog concerning Roger's lung and procedures. Sometimes during the week it is just easier to post a quick update on facebook from my phone.  It seems we are always waiting for just a little more information or test results so I want to wait to make sure I can update the blog with the most information at one time. To keep a long story short... we are still waiting. The results from the last procedure were again inconclusive.  Below is more detail of the past few weeks that you are more than welcome to read if you have time (but it might have been more for myself to actually write down the journey).

Past month recap since the 2nd procedure (needle biopsy)

After the results of the needle biopsy were inconclusive they did another catscan and found that the mass had broken into two.  The doctor was still concerned with the lymphnodes being enlarged and inflamed but we were encouraged non the less. Roger consulted with a lung/heart surgeon to see if he thought surgery was needed to further examine what is going on. The doctor had put together a team of 9 highly esteemed doctors,surgeons, oncologist and physicians to go over Rogers case. This was very encouraging to have so many "smart eyes and brains" looking at Roger. However, they all seemed to be stumped at how this wasn't making sense. They told Roger it appeared to be lymphoma or sarcoidosis.  Sarcoidosis would be the much better option but the tests done so far had not leaned that way.  So we headed out of town on vacation to try to get away all the while trying to not let the word lymphoma have any hold on us.

The following week a new pulmonary specialist conducted another procedure where they inserted a tiny ultrasound device down his throat into his airways to look and biopsy the lymph nodes.  Basically they poked a needle through his airways into 18 lymph nodes 7 times each. They also took samples from the upper lobe of the left lung. They got PLENTY of samples.  They put Roger completely under for this procedure.  Recovery was a little more rough this go around for him. He is still coughing heavily and just overall miserable.

This brings us to this past week where we found ourselves waiting once again (however, more hopeful all the poking would bring some sort of answer).  The doctor who performed the procedure contacted Roger and was a little stunned to say that everything they tested for came back inconclusive. So here we are again. The lovely word that on one hand gives relief because they haven't found cancer for sure and on the other hand is the worst word ever.  The doctor is meeting with the other pulmonary specialist to see what should happen next and to try to grasp what is going on.  They won't rule anything out on paper because they haven't found the cause. It makes sense to Roger more than it does to me. 

Amazingly, we are ok. Well, Roger is just tired..... I don't blame him. He doesn't complain. He works hard at his job when he is not getting poked.  He handles it better than I would.  I am praying and asking prayer for wisdom.  The options that I feel are coming are not ones that sound good to me given the success rate of the procedures so far.  We are thankful for all the prayers and encouragement from people spread across the Arklatex and possibly farther. We do not take them for granted.  As always I will update as we learn more. Fear is not an option for me at the moment and I know it will all work together in the end. So for now we take one day at a time and are becoming pros at waiting. What a hard thing but a blessed thing to learn.

Roger Update,Praise and Request

Roger had his needle biopsy last Tuesday morning. The procedure went good and the biopsy guy even showed roger the sample he pulled.  They told us 3-5 days they should know a little more. The pulmonary doctor called on Thursday and said that the results were inconclusive again. Inconclusive.... we are really starting to get super tired of that word.  However, the big praise that was really behind this "inconclusive finding" is the sample they pulled is not showing to be malignant.  So we chose that day to be grateful with "inconclusive." 

We met with the doctor on Friday to see what the next step is.  He is still concerned although the fact that the sample was not malignant is good.  Roger goes in tomorrow morning for another catscan.  The purpose of this one is to see if there are any changes in the spot and inflammation that is causing all this drrrrrraaaammmmmaaaa.   After the doctor looks at it he will decide if Roger needs to have open lung surgery to find out what's going on. 

I ask for prayer for wisdom.  The never ending inconclusive findings are getting old.  I'm sure Roger is getting tired of getting poked, prodded, scanned and the never ending waiting game between each medical procedure and test results. Pray that we have a peace of what we should do next. Pray that the doctor is making the right decisions as well.  

A huge burden did lift off my shoulders when the chance of cancer seems to have gotten smaller.  I am thankful for the family and new friends that have watched our kids so I can go to procedures and appts.  I am thankful for our new church and bible study girls that have wrapped our family up in prayers and encouragement.  I am thankful for my friend that paid a babysitter to come bring me coffee and sit with me during his appt. I am thankful for our pastor who spent a good 2 hours of his morning at the hospital with us before the procedure. So many little "big" things that people have done that have confirmed the God is all over this. He goes before us... he stands behind.

Easton Catchup 6 month

My itty bitty baby boy will be 7 months old in a week. That means I should do his 6 month blog while he "technically" is still 6 months. 
At his 6 month check up Easton was:
 28" (90th % length)
17lbs 8 oz (45th % weight)
16.5 (10% head-still trying to not worry about that)

Cool things Easton does in his 6 month
* sitting by himself with very little support
* Eats veggies and fruits ... he loves them
* sleeps from 7-6
* takes 2-3 naps a day
* makes all kinds of grunting man noises
* groans himself to sleep
* starting to be a little mommy clingy
* goes to the nursery at church
* starting to be more fussy.. the teeth are starting to cause a little misery
* is still a pretty laid back baby

 
 
 
 
 

 

 he is actually 5 months up above:)

 

 

 

 

 

Emma's 5 Year Birthday

Emma's birthday tends to take over for several weeks. I take a little of that blame:).  Her birthday is on July 4th, so that is a party day in and of itself. Then there is the birthday party day.  Then the steady stream of presents that arrive in the mail from family that are not in the area.  By the end of the birthday season we are pretty burnt out (well Evie is for sure;).   This year was the big #5! She looked forward to the life changing event that was sure to come with being such a big number! Roger took the whole week off from work to enjoy a little R&R. We did fun things around Tulsa and Owasso and it really was a nice week together.

Her birthday was Strawberry Shortcake (the new one). We were just thrilled to be near family and to have made new friends to enjoy the day with.

 

another Nana cake success

 

plans for a backyard water extravaganza were canceled due to downpour

 

she always looks miserable in her birthday pictures... she had a nice time. promis

 

The Sunday before the 4th

 

Her annual birthday date with daddy the night before her birthday.

 

I can't believe this is her 3rd time to do this. She was wearing her new locket that was from her Mimi and Pops.

 

5 Year Old Interview

 

• What did you do on your Birthday?         Went on a date with daddy. We watched a movie and ate popcorn. It's my favorite thing to do
• Favorite toy?                                               Ariel and Tinkerbell
• Favorite TV show?                                     Sheriff Callie
• Favorite outfit?                                            Minnie Mouse dress and Minnie mouse PJs
• Favorite animal?                                          elephants
• Favorite song?                                             Jesus Loves the Little Children
• Favorite book?                                             Ariel book with Christmas
• Favorite snack?                                            oranges
• Who is your best friend?                              Trevin
• Favorite lunch?                                             pizza with no sauce
• Favorite Holiday?                                         Christmas
• What do you sleep with?                              Tinker Bell and Ariel
• What do you want to be when you grow up?  A mommy
• Are you excited about kindergarten?            Yes
• Why?                                                             I dunno things I'm going to do

 

 

My Emma ... I don't know what this year holds for you but I pray that you start to feel God's call and feel his love in your little heart.   love mommy

 

 

Roger update-waiting

This one will be quick...partly because there isn't a lot more to tell... and partly because my children are all in the next room and there is a real possibility the girls are sending Easton on an "extra fun" swing ride.

We went back on Thursday for the results from the bronchoscope.  Basically, the results were not conclusive. He was unable to get the tissue needed from the mass because it was so far down in the lung.

So now we wait the phone call from the hospital to set up an apt for the needle biopsy.  We should hear something at the beginning of next week.  As the nurse told us, "sorry, we are in a hurry to wait."

Thanks ahead for the prayers,
Steph

Roger Update #1

I have gone back and forth in my head of whether to write information on facebook or on this blog about where we find ourselves this week.  Part of me wanted to keep it out of the social media spotlight.  Honestly, a little part of me did not want this week documented in something as permanent as a blog or journal. I felt that if I wrote it down then it is really really really for real (I know wonderful reasoning skills).  

Back story
Roger has had a chronic cough for almost a year now. It comes and goes and gets better for a short time period then worse.  He has been on steroids, antibiotics, been tested for every allergy under the sun, diagnosed with silent reflux (vocal cord dysfunction) and then sent on to a pulmonary doctor when nothing seemed to help. 

The past few weeks
We went to the doctor 3 weeks ago anticipating for them to do a scope.  When we arrived the doctor informed him that he must first do a CT Scan before they proceed. So that's what he did 2 weeks ago.   We met up at with the doctor last Thursday to review the findings from the scan.  The scan revealed a mass or tumor looking type spot in his left lung.  That's when you see that on the screen and hear those words..... that's a sucker punch to the gut.  The doctor is a man of little words and not what I would call a "people person."  I like people persons. Anyways, the doctor told us that he wanted to be aggressive in finding out what it is.  He scheduled a bronchoscopy for the following Monday (which was this morning).

The Bronchoscopy
 The goal of the bronchoscopy was to attempt to get a sample to biopsy by going down his throat into his airways and lungs.  (don't quote me on the order of how they did it... like I said.. doctor of few words).   Our big prayer is that they got what they needed by this procedure.  If they didn't then we have to talk about using a needle through the lung wall or open lung surgery.  The procedure went good as far as I can tell. He said his airways looked pretty good and he tried his best in the lung to get what he needed but won't know for sure until Thursday.  So that information is all we have for now.
 Roger seems to have recouped from this morning as he was pretty groggy and out of this afternoon.  He was attempting to do work from his phone on the way home from the hospital (which I discouraged...hehe... who knows what he texted his people at work).  He forbade any pictures or recordings during recovery time.. sad too because humor is one of my coping methods:)

The Support
We have been blessed already by numerous people praying. Our pastor stopped by on Saturday just to talk and pray with us. We have been meaning to do the last steps to join our church which we also finished up this weekend. It was such a God thing.. when we joined, the pastor asked the congregation to pray over us. Y'all I can't tell you how many people came up and prayed over us(mainly because it's really hard to see when you are trying not to LOSE IT and have a bad case of the scrunchy cry face disease), but it felt like a lot.  We are so thankful to be here in Oklahoma surrounded by Roger's family. I'm thankful to have a mother and father who have walked this road recently and can empathize and encourage. We are so thankful that the young families at Central have drawn us in and befriended us. It's an amazing thing to be loved and cared for by believers.


I think that pretty much recaps the past few weeks.  I most definitely don't have it all together and emotions rollercoaster daily. The girls don't know anything about what has been going on and will not until we know a little more. I know who is in control. Roger knows who is in control. We will see how God uses this storm (I'm selfishly praying its more of a thunderstorm and not a tsunami).  I hope to post soon that it is not cancer and we can all do a praise Jesus happy dance together!  But no matter the outcome we will praise Jesus.

and that my friends is why I finally decided to post on this thing called social media... because no matter what.... our Jesus will get the praise and glory..... Amen and amen

Emma PreK 2013-2014

2013-2014 was a whirlwind of change, decisions, adjustments and more decisions. We were living in Pryor in July and we were faced with the decision of what to do for Emma in regards to preschool. Long story short we decided to do a little bit at home and she went to a mothers day out at First Baptist Pryor. It was the best decision and it really turned out to allow open doors down the road.

 

So we treated her few days at MDO as her first day of preschool.

 

She really thought she was a big girl.

 

Evie got to go 1 day a week as well:) That was a blessed day for this tired Prego momma!

 

 

We moved into the house here in Owasso on October 31, 2013. Which meant no more FBP and we were faced with another decision of what to do. We felt she needed a more structured environment to get ready for kindergarten. Praise God the house we found was right across the street from a wonderful elementary. Roger and I went in and met with one of the counselor's and knew at once that this is where we would send our children until God opened up other doors. However, there was a waiting list. So we waited. Emma was able to do speech at Bailey in the mean time which was a perfect introduction to the school. One week before Easton was born we got a call that there was an opening in the morning pre-k class. Did we want it.... YES!!!!  It was hard and I cried at the finality of my little girl attending a public school but it was such a blessing and a burden taken off of my shoulders at the same time.

 

 

First day at Bailey Elementary

She had an eye bobo from something so I was a little paranoid with sending her with an almost black eye...but we had a one week to get that routine before Easton was born. She did great! We walked her into her class the first day. The next day we did the car drop off line (I thought she would freak and not get out). She got out and didn't look back. My heart was grateful AND broken. It was nice to have a few hours each day that week with Evie all to myself before Easton was born.

 

Long story short... she had a wonderful semester and it helped us both feel much more confident for Kindergarten. I love being right across the street and walking on the pretty days to drop and pick her up.

 

Last day of Pre K 2014

 

Emma Grace is a trooper. She transitioned through moving states, homes, friends, churches and becoming a big sister again. She did it far better than I could have imagined. I love watching her grow and learn and could not be more proud of her. Seriously, I get so proud just watching her say new words correctly, learn how to put her face in the water when she swims and saying her ABC's.

 

 

 

 

 

 

Can it be 4 already!

4 Months has FLOWN by! Easton has proved to be one of the most chill, easy going babies.  He is just a true joy to have around. Here are a collaboration of pictures from my phone from the past few months.

 

He now has gone to the movies twice.. such a sport

 

 

mothers day

3 months old

 

my attempt at a pacifier.. thought it might take... the only time he kept it in his mouth.. but it was so cute!

 

Got to go to Emma's first field trip to the zoo.

 

It was a family affair

 

ahem...just the cutest little boy to ever wear a baby hat

 

I know he will love both sisters and lights up when either of them get into his personal space....but I feel he and Emma have bonded.

 

It is nice I am getting to where I can trust her to hold him for a few minutes at a time while I get things together in the morning ..aka... make chocolate milk for the girls

 

We had to switch to the bottle around 3 1/2 months and luckily it seemed to have hurt my heart more than his. Taking the bottle like a champ

 

Had a little rough afternoon one day= lots of snuggles and a new movie download on the xbox to entertain the girls so I could just hold him.

 

He can eat through anything

 

"Oily baby"  ... momma's been into essential oils.....can ya tell?

 

I don't know where he got the big mouth :/

nothing sweeter than a baby after a bath

 

 

trying out the high chair

 

first playtime in sisters room

 

Evie "shared" all the blocks

 

again.. Evie sharing some dolls

 

4 month check up.. pre shots

 

summer swim gear... total wrong size hat... couldn't wait to buy a little boy swimsuit

 

let his little feet in the little wading pool/sprinkler... he didn't like it:)

 

 

 

 

Cool things 4 month old Easton does

* Laughs/deep chuckles- really gets going for daddy.... like a lot

* sleeps in his crib from around 7:45-6:30 (amazing!)

* has been battling cradle cap ..hopefully about to beat it

*sounds raspy when he breathes but is evidently just him

reaches for toys (barely) and started pulling them to his mouth

* rolls to side

 

 

4 month measurements

 

26.25 length- 90%

14lb 13oz- 50%

head circ -20%