FAP Update - Met with the Surgeon

We met with a surgeon last Wednesday per Dr. B's request. Dr. N walked in shook our hands then turned to me and said, "So, you're the doctor who came up with the diagnosis?" Yes, yes I am!

There were really no surprises. The surgeon said, generally speaking, the surgery should be done once the patient has 20+ polyps. Wesley is well past that point. He said it is a good time to do it. Wesley is healthy.

One of my questions for him was if he knew of anyone in the Phoenix area who specializes in FAP (or at least knows a bit more about it). We all like Dr. B, but he is the first to admit that he doesn't have a lot of experience with this disease. He has recommended getting a second opinion several times. I never felt the need to get a second opinion regarding the diagnosis. I always thought I'd save the second opinion for surgery timing. Looks like that time has come. We got a name and made an appointment, but we can't get in until late March. We would like to see that doctor before surgery so that pushes things out until at least April or May.

Although we had already read about it, it was good to hear Dr. N explain the surgery. It will take place in two parts each requiring an approximate 5 day hospital stay. During the first surgery, they will laparoscopically remove Wesley's large intestine (total colectomy). The surgeon will form a "j-pouch" with the far end of the small intestine. However, this pouch needs some time to heal before it can hold feces so they will temporarily run Wesley's small intestine to a hole or stoma on his abdomen where his waste can flow out into a bag. This is called an ileostomy.

After about 8 weeks, when things are sufficiently healed, they will perform another surgery connecting the small intestine to the j-pouch section and close the stoma. Feces will then be able to come through the small intestine and j-pouch. It will always be more liquid and more frequent than that of a normal person. The surgeon said there really aren't any particular dietary restrictions with a j-pouch, but patients learn what causes things to move through more quickly and avoid them if they won't be near a bathroom.

Wesley will continue to need ongoing "surveillance" of his remaining digestive tract. Endoscopy to keep an eye on his stomach and duodenum as well as the remaining part of his rectal area.

Wesley continues to feel great. I don't think he was really surprised by what the surgeon said, it was all things we had talked about ahead of time. He doesn't have too many concerns at this time, he's most concerned about being in the hospital for so long. Can't say I blame him! As always, continued prayers are appreciated.

This year National Dress in Blue Day for colon cancer awareness is Friday, March 3rd. Wear blue and post a photo to Facebook and tag me or Wesley. He sure enjoyed all the photos our friends and family posted last year!

FAP Update - January 2017

Wesley had his second colonoscopy Friday, January 13th. The prep on Thursday went well. Thankfully, Wesley doesn't really mind the clear liquid diet. He even felt confident enough to go to his Latin class.

Mid-day Thursday, I got a call from the doctor's assistant letting us know Wesley was being bumped back on the schedule from 9am to noon due to the doctor needing to squeeze in two younger patients. The later time slot made the drive easier as far as traffic goes, but it made for a longer time of complete fasting which is, understandably, Wesley's least favorite part.

We got to the hospital for registration right on time at 10:30am. When they called to do some of the pre-admission paperwork I had asked about parking because I couldn't remember what we did last time. The gal I spoke with made it sound simple... but there was basically NO parking and we ended up having to valet park. Which, once we got there, I remembered is exactly what we did last time! Note to self: Skip the driving around and just valet park.

Since we valet parked we walked through a few hospital hallways to get to registration. The lady at the registration desk felt really bad about the high out-of-pocket cost that came up on her screen. Guess that's the downside of high deductible plans. She didn't even know that worst of it... our HSA account had several thousand dollars in fraudulent charges last summer and we didn't notice until it was too late to make a claim and recover it. So our health savings account was pretty much empty!

Once all that was settled, we were off to the Endoscopy department. They got Wesley checked in and all set up much quicker than last time. In addition to the usual check-in business, they put in an IV. Wesley had a bad experience with getting an IV during a CT scan and he was not happy they didn't let him wait until he was out before putting it in this time. I was watching his heart rate on the monitor as she was putting the IV in. It went up a good 40 beats per minute! He was tough and, thankfully, it only took her one try.

All that was a bit of "hurry up and wait" though. We spent a longer time waiting in the prep area this time. We got to overhear lots of interesting conversations while we waited (the lady next to us wasn't prepped correctly). Wesley was getting a bit irritable and he was too distracted to pass the time reading. The nurse offered a portable DVD player, but the movie choices weren't anything he was interested in.

It turned out they weren't able to get a hold of one of the young patients who was supposed to be ahead of Wesley. I think they were just going to send him back when she showed up. They asked Wesley if it was okay if she still went first and he said that was okay. I think he felt good about his decision when the little four year old girl wheeled by. With a tear in his eye he said, "She's even younger than Annabeth." God blessed him with a big heart for little kids!

He didn't have to wait too long before it was his turn to be wheeled back. I gave him a kiss and headed to the waiting room. The procedure ran well over the "hour" the nurse said it would take, but this time I was expecting it. Dr. B came out to the waiting room to give me the results before Wesley was even settled in recovery.

The results were nothing unexpected or too surprising. Wesley still has many, many polyps throughout his large intestine. They seem to be really concentrated in the rectum. The doctor said polyps pretty much "carpeted" his intestinal lining in that area. There were fewer polyps than last year in the distal parts of the large intestine which was good to hear. Although the ones he did see were larger than before, guess that is to be expected since they have been growing longer.

I was not happy to hear the doctor found some polyps in his stomach and duodenum (the beginning portion of the small intestine) during the EGD this time. The EGD last time was all clear. The doctor said those polyps have a smaller chance of turning cancerous which is good since they can't take out the whole digestive tract!

Polyps in the stomach

Many of the polyps were "burned" or removed and sent for biopsy. Please continue to pray those results are good.

Polyps after coagulation

So right now the plan for Wesley is...

1) to continue on his medication - the doctor said the meds may have contributed to seeing fewer polyps in the distal portions of the colon.
2) meet with a surgeon to get a plan in place for the future (and because Dr. B thinks a colorectal surgeon may have more experience with FAP than he does).

The rest of recovery was uneventful. Wesley was sitting up and sipping some apple juice within a few minutes.  Shortly after that the nurse had the valet guy bring the car right to the door for us and we were on our way. We made a quick pit stop at McDonald's for a chocolate shake and drove on home.

We didn't arrange any secret mail this time, but our neighbor brought over a super cute candy bouquet and some sweet friends brought some goodies and a gift card as well. Thank you to everyone who prayed for Wesley and for all of us. Your prayers did not go unanswered. We really couldn't have asked for things to go better regarding the prep and procedure. We continue to praise God that we even know that Wesley has what could have been a silent killer!

UPDATE: Biopsy results came back with "mild dysplasia" which is similar to last years results. We have an appointment with a surgeon scheduled for the first week of February.

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.