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!
Thursday, December 4, 2014
Tuesday, September 30, 2014
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
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
Thursday, September 11, 2014
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.
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.
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.
Monday, August 18, 2014
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.
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.
Thursday, August 14, 2014
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
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
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.
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
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