Pride Cometh Before a Fall

After church we usually stick around and chat for a little bit. After our usual chatting, we loaded up in the van and headed home. We got a couple miles from church when Justus said, "We forgot JD!"  Since Justus likes to joke around, my first thought was he was kidding. I said, "JD if you're in here speak up now!" No answer.  Jerry hit the brakes and stopped the van right in the middle of the road. Thank goodness no one was behind us!

We turned around and headed back. Of course, because we were trying to get back as fast as possible, we had to pull over for not one, but two, fire trucks in the short drive back! I sent a text to our friend Claudia, who I knew was still there when we left, telling her we were on our way back, but her phone was on silent. Jerry's phone was as well or we would have heard it ringing because another church friend Wes was trying to call him to tell us JD was still there!

We pulled into the parking lot to find JD standing in front of the church with a small crowd of laughing adults behind him! I wish I would have thought to take a picture. I crack up just thinking about it!

JD jumped in the van and told us his side of the story...

He and a friend were collecting the little wine/juice cups from the Lord's Supper. When they finished he wondered where we all were. The friend joked, "I bet they left without you!" So they went out to look for us and, sure enough, JD was shocked to see the van was gone. They ran in and told a few adults who then tried to call Jerry.

We have been parents for almost 26 years and this is the first time we have ever left someone behind. I guess of all the places to leave someone, church was probably the best! It was a good reminder for everyone to just stay put if that happens. Eventually, we'll figure it out and come back for you!

Before we left home to go back for evening service we reminded JD to grab his Bible. His reply... "Don't want it to be left behind LIKE ME!" Then when we got back to church we were asked several times if we had everyone! It'll be awhile before we live that one down! Several people shared their own "kid left behind" stories. Seems no one forgets when it happens... I'm sure these 10 minutes will be remembered a long time and the story will be told in our family many years from now! For that reason, I thought I'd write a quick post to record the details so there is no embellishing of the facts 20 years from now! ;)

What a way to celebrate...Father's Day!

FAP Update - Second Opinion

After meeting with the surgeon in February, we decided it was time to get a second opinion. We never felt the need to get a second opinion on the diagnosis, but we wanted to make sure that it was the right time for surgery. So, we made an appointment with the GI doctor that the surgeon recommended to us. We finally saw him the end of March. (This post is way overdue! Sorry!)

Dr. M was very nice and, more importantly, actually has experience with FAP patients. He has both pre and post surgery FAP patients which makes him a good bit more experienced than Dr. B. We shared Wesley's story with him. Like most of the other medical professionals we've met along this FAP journey, he was quite interested to hear the story of Wesley's diagnosis.

Dr. M told us he would recommend holding off on surgery for the time being. Surgery would become necessary when the polyp count is around a thousand. We were a bit surprised to hear that since the surgeon said 20 polyps! He asked us to request a copy of the biopsy results for him to look at before he made a final decision, but from what we told him about the verbal results he said we could wait. Personally, I was happy to hear this. We know the time for surgery will come eventually, but I would like to see Wesley stay whole for as long as possible.

Dr. M also said he was glad to see Wesley was already taking Sulindac since research shows it can slow polyp growth. I was happy to hear that as well because insisted Dr. B put him on it even though he didn't think it would really help. He did suggest a different antacid to go along with it, so we got a prescription for that.

The plan now is to follow up with Dr. M in July. At that time he'll do an exam and see how things are going. If all is well, we will schedule another colonoscopy in December. Having Dr. M do the colonoscopy this time will get us another (second) opinion on the polyp count and how best to proceed. Good news... he does procedures right in his office so we won't have to go to the hospital. We were super pleased to find that out.

We were on the surgeon's schedule for May 2nd, but called and cancelled. Well, it's really more of a reschedule with an unknown date. We had been working really hard to stay on track with school work so we could have it all done before the surgery. Praise God, now we can use that time to swim or read some fun books! Keep praying and stay tuned.

Quick update: Jerry and I finally got our genetic test results. There were no surprises. Both of us tested negative. This doesn't change anything as far as Wesley's treatment goes. It just means the chances of any of the other kids having FAP are pretty much zero. Knowing this we have decided not to test any of them. Of course, we will keep watch for CHRPEs or osteomas or any other issues plus probably suggest earlier than recommended colonoscopy for them in the future.

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.