Covenant Children

As Jerry mentioned in the previous post, we are now members of the Orthodox Presbyterian Church (OPC). Our decision to join was not taken lightly or made on a whim. Many months of prayer, study, and discussion went into our decision. Up until this change, we have never really left a church where we were members/long-time regular attenders for any reason other than a cross country move. It was an emotionally hard process and not one I'd like to repeat! We were saddened by the fact we left friends we love dearly behind at our old church, but we just could not, in good conscience, worship there any longer.

There were many factors that led to our decision, but the one most discussed by Jerry and I was baptism. Who should be baptized? When? And by whom? If you're an evangelical Christian you might just say... believers... when the profess... by whoever. And lots of churches with a Baptist outlook (even if they don't call themselves "Baptist") would agree with you! But if you're a Presbyterian you would say... believers AND their children... when they profess, are born to believers, or join the church... only by an ordained pastor.

There are lots of reasons we came to agree with the Presbyterian point of view - the most important one is the Bible. The Bible is a long book and a lot of people can read the same verses and end up with different doctrine. Why is that? People define words differently. My definitions of "salvation" and "atonement" are much different than that of, say, my Mormon neighbors. This is why we have come to see the importance of creeds and confessions. Confessions, especially, sum up what the Bible says and help you find people who define words the way you do and believe same things. It is a joy to worship with people when you are all on the same doctrinal page! The confession we used to help us understand baptism and all the questions surrounding it was the Westminster Confession of Faith (WCF) and the Larger/Shorter Catechisms that go with it.

I wish I could say we just read it once and were convinced, but that was not the case. Like I said, it was a process. Discussion. Prayer. Study. While the WCF isn't that long, it backs up every statement it makes with verses from the Bible. Reading and studying those verses took time. Once convinced, we wanted to have the kids baptized; however, if we were going to do it, we wanted to do it right. 

The same confession that convinced us baptizing the kids was the right thing to do also convinced us that the baptisms couldn't be performed at the church we were currently attending. If you don't hold to the WCF, I understand you might feel differently. But I also hope you understand that if someone says they hold to the WCF (or any other confession/standard) then it is important to actually follow it, even if it is inconvenient or hard to do so. Anything less is hypocrisy.

We were convinced the WCF was the best summary of the Bible and we wanted to find a church that followed it. There are a few churches who use the WCF as their standard. We visited a couple, but in the end the OPC was just a better fit for our family. They take the Bible and doctrine very seriously and we LOVE that about them!

Sunday, November 4th we became members of the OPC and our first act, after our membership vows, was baptizing the children. Wesley, having made a profession of faith, was baptized and received as a communicant member. The rest of the children were baptized as our covenant children. Lord willing, at some point in the future, they will make their own professions of faith and become communicant members as well.

Here are a few photos from the day. Special thanks to one of the elder's wives for taking the photos for us!

Wesley

Eli

Justus

Hayden

JD

Annabeth

We were blessed to have my mom in town that weekend. Our dear friends, Pearl and Dan, were also able to come.

with Grandma Linda

with Pearl and Dan

with Pastor Joel

Wesley is studying Latin this year so I will end with this...

Soli Deo Gloria! To God alone be the glory!

Pearl took a video on her phone. It was taken with a cell phone so it's kind of hard to hear, but here is the video it you would like to see it:

Church

A note from Jerry:

A quick note on a change in our lives. After a lot of discussion, reading, praying we decided to change churches. We loved the folks at our last church, but we became convinced that some of the leadership practices simply were not biblical. Nothing sordid, just not in accordance with God's Word.

Our research lead us to the historic creeds and confessions of the Protestant Reformation. In particular, the Westminster Confession of Faith. We believe the Confession, along with the Catechisms, give the best summary of the doctrine found in scripture including who God is, who we are and how we are to live in light of this.

Because of this, we have decided to join the Orthodox Presbyterian Church (OPC).

It initially seemed a little strange to be joining an old denomination in the age of mega churches and hipster pastors, but we're convinced it's the right thing to do.

As Presbyterians, we believe that our children are part of the covenant community and as such they are to receive a sign of inclusion in the visible church. This is what baptism is for. Since we didn't baptize any of the kids as infants, we did that when we became members. Wesley made a profession of faith to our pastor and the elders and he was baptized and become a communicant member of the church. The other children were baptized as our covenant children. (Shelly will be sharing a baptism post with photos soon!)

If you have any questions, we would be happy to talk to you about them.

Jerry

Here are some links in case you are interested:
Our Church
The OPC
The Westminster Confession of Faith

FAP Update - October 2016

After a LONG wait, we finally had an appointment for Wesley with the genetic counselor and doctor team on Thursday, October 6th. I, personally, found it very interesting. (Wesley didn't!) I think they found US interesting as well. They usually help diagnose conditions like FAP in families so it was a different for us to go in knowing the genetic results already. They pretty much confirmed what we expected... they don't THINK Wesley inherited the FAP from me or Jerry, but the only way to know for sure is to test. So that is where we will start. If Jerry and I both test negative we will not test the rest of the kids as the chances of them having it are just about zero. If one of us tests positive, we will have to move quickly to get treatment. We'll start with getting insurance pre-approval for the testing and go from there.

The most interesting part to me was getting their help with interpreting the genetic testing results. There was a small piece of info in the results that I didn't realize was there. They know the exact spot on the gene where Wesley's genetic code went wrong. The gene runs from 0 to 1500 something. Wesley's error is at the 554 spot. They have actually done some studies on symptoms and these numbers. With his number, Wesley is in the middle range for time of onset of symptoms. Not surprisingly, he is in the number range where it is more common for patients have CHRPEs. It's fascinating to me that they figured this all out and have studied it. Apparently, people whose error is at 1309 have very severe and early symptoms so we were thankful to know that Wesley didn't have an error at that position.

So, in the next few months Jerry and I will have genetic testing done. Now that they know the exact spot of the "error" they can just go right to that spot on our genetic code and look. Wesley's next colonoscopy is scheduled for January 13th. We will know more about how to proceed once we know those results. Please continue to keep us in your prayers!

FAP Update - July 2016

We had a follow up appointment with Wesley's GI doctor today. Last week, he ordered a thyroid ultrasound because FAP can cause cancer in other parts of the body, including the thyroid. The ultrasound was completely normal. It is something we will continue to check up on periodically.

The doctor didn't really have any new information for us. Thankfully, he agreed to schedule Wesley's next colonoscopy in January so we don't have to worry about it at Christmas time. He asked if we had gotten a second opinion, which we have not. We don't doubt the diagnosis. I think the second opinion will come in regards to the timing of his colectomy. He also asked if we had started the process of genetic testing for the rest of the family, which we have not. Although Jerry has called a few places. Genetic counselors are, surprisingly, hard to find even in a big metro area like Phoenix.

We will have to wait and see what the next colonoscopy shows before we make any surgery decisions. The average age of colectomy for FAP patients is late teens or early twenties. It seems those who know about it early tend to have the surgery earlier. I would like Wesley to keep his colon as long as possible, but the doctor reminded us they "are in the business of saving people, not colons."

I did ask him about a medication I had heard about called Sulindac.  They usually give this to patients after they have their colon removed to help prevent polyps forming in the remaining parts of the digestive tract. However, there have been a few studies that showed fewer polyps in people who took it who haven't yet had surgery and I wondered if it was worth a try. It is not a cure. Just a possible way to slow down polyp growth. The doctor had heard of it and didn't think it would really help, but since the medication has basically no side effects (it's in the same family as ibuprofen - NSAIDs) he was willing to let him try it. So we got a prescription for that.

Wesley is feeling great. No issues at all, digestive or otherwise. According to today's measurement, he is 5 feet 7 inches tall! He will be starting his homeschool high school journey in a few weeks. Please continue to pray that he stays healthy and that it will be abundantly clear when the time is right for us to move forward with the colectomy.

The End for Now (FAP - Part 5)

Wait! Have you read the other posts? They are here... part one, part two, part three, and part four.

We got a call on December 23rd that that the biopsy results were normal. No dysplasia or cell changes at this time. That was good news! It doesn't mean he won't need surgery, it just means he doesn't need surgery immediately. The doctor wants to see Wesley again in six months to see how things are going and to check his thyroid and liver. FAP, especially Wesley's type, can have other non-colon issues like cancers of the thyroid and liver. The chance is small, but a greater risk for him than someone without FAP.

I asked the doctor if it would be "straight forward" from here on out now that we know for sure Wesley has FAP. He said no, nothing is straight forward about this. It is a rare and unpredictable disorder. He only saw it twice when he was in school and Wesley is his first patient to have it since he has been a doctor. There are doctors who specialize in FAP and other hereditary colon cancer disorders and he wouldn't be offended at all if we wanted to get a second opinion from one of them.

So, where do we go from here? The next step is meeting with a genetic counselor. FAP is usually inherited, although about 30% of cases are spontaneous gene mutations. We are pretty sure that neither Jerry or I have it because we would already have colon cancer if we did, but it is pretty much standard to have the whole family (parents and siblings) tested when there is a known affected family member.

Beyond that, Wesley will have another colonoscopy in a year. We will see how many polyps he has at that time. When there are more polyps than the doctor can remove during a colonoscopy then it will be time to think about a colectomy (colon removal). Our goal is to keep him whole as long as possible without putting him at risk for cancer. Every FAP patient is different and there really is no exact timeline.

Please let me know if you have any questions. I know this was a lot to read and take in especially for those of you who had no idea this was even going on. Thank you for "listening". Now that I'm all caught up, I will post any updates as they happen. Prayers, especially for Wesley, are always appreciated! The prayers we have received up to this point have made a huge difference! No matter what we know God is in control of it all and He knows what He's doing!

If you want to read more about FAP, here are some links for you:
Familial Adenomatous Polyposis (MD Anderson)
A Patient's Guide to FAP (HCC Takes Guts)
Gardner syndrome (cancer.net)
Familial Adenomatous Polyposis (cancer.net)

If you want to read more about hereditary colon cancer disorders (including Gardner syndrome and FAP) visit HCC Takes Guts. The gentlemen that runs this website calls people like Wesley cancer "pre-vivors" because they fight cancer in a special way - before it happens!

One last thing... I know it's a little ways off, but March is National Colorectal Cancer awareness month. It is also happens to be Wesley's birthday month! March 4 is Dress in Blue Day to help spread awareness about colon cancer. We'll all be wearing blue! Feel free to join us!

Future updates can be found by clicking... HERE!

The Procedures (FAP - Part 4)

Please read part one, part two, and part three before continuing on...

They always say the prep is worse than the procedure when it comes to colonoscopies, so that is what I kept telling Wesley. He wasn't that worried about it. A diet of clear liquids sounded kinda fun to him. The thought a camera visiting his insides didn't even him bother him that much. He was more worried about getting another IV than anything else!

Bowel prep for kids is, thankfully, milder than the adult prep. I bought two over-the-counter laxatives and a shopping cart full of clear liquids to have on hand. We made several batches of jello and Kool Aid ice cubes to turn into popsicles and slushies and got started.

It went well. It went really well. There were, of course, trips to the bathroom, but nothing too bad. Wesley is my lightest eater so he didn't even really feel deprived skipping meals. He really enjoyed the broth and jello and drinks of all kinds. Everyone else was jealous of his special treats! Even completely fasting from midnight until the procedure wasn't that bad for him. He was hungry, but didn't really complain too much about it.

We were supposed to be at the hospital at 9:30am for the 11am procedures. Traffic and parking went better than expected and we were checking into admitting at 9am. We were called back to the prep area about 10:30am. Wesley was weighed and measured and got to pick out a stuffed animal to keep with him. He chose an odd looking little brown Beanie Baby bird (the tag said his name was Beak). Then he changed into a hospital gown and had his vitals taken. We met with both the anesthesiologist and Dr. B before the procedure.

The anesthesiologist was kind of a character. He asked Wesley if this was his first time with anesthesia and when he said yes, he replied "Me too!" He let Wesley choose if he wanted the medicine to put him to sleep through a mask or an IV. Of course, Wesley chose the mask. He would still get an IV, but this way he wouldn't be awake for it!

I asked the nurse about how long the procedures would take. She said an hour, but not to worry if it went longer than that. Thankfully, they were running on time. I was able to stay with Wesley up until they wheeled him into the procedure room just before 11am. I gave him a kiss and a hug and went to wait in the waiting area.

I checked Facebook. I sent a few texts to Jerry and Roz. I read a couple magazines. I tried to read a book I brought. An hour passed. Then an hour and a half. Then two. Just when I was starting to pace and get really anxious they called me back to recovery. Wesley was still groggy. He tried to sit up a couple times, but we told him to just lay down and rest. He came around pretty fast and was sitting up and chatting with me before too long.

Dr. B came to talk with us. The good news: the endoscopy was completely normal. No issues at all. The bad news: the colonoscopy was not normal. There were already polyps. Lots of them. I think even he was surprised how many there were. He removed over 40 and he was sure there were some he missed. He said it was the ones he missed that worried him most.

There is no way for them to ever get all the polyps. It's not that he gave up taking them out, he got as many as he could see, but there were probably some hidden in intestinal folds that he didn't see. The polyps are very small (2mm) and the same color as the rest of his intestine so they are camouflaged and hard to see. They were not concentrated in any one area, but spread throughout the whole colon. He saw one right at the beginning and more around each corner all the way to where the large intestine meets up with the small.

This is why they will eventually have to take out his colon. They know they could never get them all and it only takes one they miss that could be the polyp that becomes cancerous. The polyps he did remove were biopsied and sent to the lab. If any of the biopsies come back already showing dysplasia (cancerous cell changes) then we will have to start thinking about surgery sooner rather than later. If they come back okay then we will wait and do a repeat colonoscopy in one year.

Despite some of the less than positive news, we know prayers were answered! Wesley did great throughout the whole thing - both prep and procedures couldn't have gone smoother. He had no trouble at all with the anesthesia. There was no pain or bleeding from the polyp removal. His only complaint was hunger and you couldn't blame him for that!

Once he was good and awake the nurse gave him a much needed apple juice to sip on. Not too long after that he was up getting dressed and we were on our way home! Well, we didn't go right home... we made a quick pit stop to grab me a late lunch and Wesley a milkshake. We were just following orders - a milkshake was actually suggested on his discharge paperwork as post-procedure food!

We had a little surprise waiting for him when he got home. We had asked family and friends to send a card. I had intercepted the mail all week so he wouldn't see them before he got home from the hospital. A few kind friends even secretly brought small gifts. Wesley was so surprised and thankful! He asked several times how we managed to keep it a secret! He spent some time on the couch opening his big stack of envelopes and reading everyone's notes.

He wanted to display them in his room, so we hung them all up on the wall where he could see them.

Special thanks to all of you who sent something! It really made him feel special and loved.

On to the last post...

The Results (FAP - Part 3)

Read part one here and part two here, if you haven't already.

Ten days before the scheduled endoscopy and colonoscopy, I got a call from Dr. B. The final results of the genetic testing showed that Wesley does have FAP. The endoscopy/colonoscopy would remain on his schedule for the 18th, but he wanted to make Wesley the last case of the day so he could take his time and possibly remove any polyps that had already formed.

Jerry travels for work once or twice a year. He was on a plane when I got this call. I texted him and asked him to call home when he landed. I told him about the results as he walked to his next plane between flights. Then I told Wesley. He was upset, but took the news pretty well. We had already been talking about it and answering his questions for several weeks. I told him (and everyone else I talked to) over and over what a blessing in disguise it was that he had that lump on his jaw to alert us to what was going on! Not everyone with FAP has osteomas and/or CHRPEs and without those we would have never known!

There was one benefit to all the waiting. The whole thing had been such a slow process, spread out over months, that there was plenty of time to get used to one thing before moving on to the next. Since we were the ones to discover it in the first place there was never really a shock moment with a doctor where the doctor had to sit us down and break the news to us. 

The hardest part for me was back when we were first waiting to see the ENT doc and I had an idea what was going on but didn't know for sure. I couldn't sleep or think about anything else, but when we got no answers, I moved from worried to angry and determined to get answers. Then with all the delays, we got to the point where there was nothing to do but wait and pray. So that's what we did. We shared what was going on with a few close friends and family members and asked them to pray too.

We are just really thankful that God left all these clues for us and we followed them. I truly believe God has a plan here, He has all along. The plan for us to find out about Wesley having FAP was set in motion as far back as 2008/2009 when the eye doctor found that CHRPE in Wesley's eye and took the time to explain it to me. If we didn't have one piece of the puzzle, or even if a different parent had taken Wesley to a past appointment, we wouldn't have figured this out. None of us wanted this, but we're grateful we found out now and not when it was full blown colon cancer in a few years. 

Are we upset? Sad? Worried? Even a little mad? Yes! But here is the deal... Wesley has had this all along. From the moment he was conceived and his whole genetic code was written he has had this. We just know about it now. And it's much, much better to know about it!

The plan was to have Jerry take the day off and stay home with the rest of the kids when I took Wesley to hospital for his endoscopy and colonoscopy. Before we got the genetic test results, I have to admit I was a little worried about the fact that I would be alone when the doctor shared the news that Wesley did, in fact, have FAP. There was no need to worry about that now! Because of this phone call, I knew before we even went in. He definitely had it. The new unanswered question was: had the polyps already started to form?

We would have to wait until the 18th to find out.

Go on to part 4...