Thursday, May 19, 2011

Update on Nick 5/19/11

Thank you for your patience and continued prayers.

I did receive the results of the pill camera endoscopy on Monday, 5/16. The results completely caught me off guard and I have needed a few days to let things sink in some, as well as try to come to terms with the new information.

Dr. M (Nick's GI doc) told me that sometime after the 3 hour point in the study, there began to be images of polyps in the small intestine. The polyps are small, which is good. However, the doctor stopped counting at 20 (which is normal procedure). Twenty is the "marker" of sorts for determining how familial polyposis (FAP) is advancing.

Apparently, the polyps continued to be seen throughout the remainder of the small intestine.

None of the polyps looked cancerous. Everything looked small in size.

Dr. M told me that there isn't really any kind of treatment. They just try to go in and remove what polyps can be accessed. Then we wait. Wait for what? Wait for a polyp or polyps to grow to a size that causes a bowel obstruction, turns into cancer, or both. It is not an IF. It is a WHEN.

I know that sounds harsh and very matter of fact. That IS the reality I have been trying to come to terms with since Dr. M and I spoke on Monday.

Why can't the polyps be removed? The small intestine is about 20 feet long. The human body cannot live without a small intestine. That is where the body absorbs it's nutrition from food. Because the small intestine is so long, it is tightly packed into the abdominal cavity and has many curves and turns. There are portions of the small intestine that are NOT accessible by endoscope. This is why Nick had the pill camera endoscopy done. It is the technology available to see portions of the small intestine that cannot otherwise be seen.

What does all of this new information mean? Well...basically it means that Nick has a more aggressive form of FAP than Keith had. We did not find out that Keith had FAP until he was 33. Then it was only because he had a blockage in his colon. Tests showed that it was cancer caused by FAP.

A little history: Nick was diagnosed with the rare liver cancer in 1995. At the time, there wasn't much information about FAP or the cancer Nick had. Both diseases were and still are rare. When Keith was diagnosed with his cancer and the FAP, we had genetic testing done on Keith and then the kids (which is standard procedure). Once we knew that the FAP gene had been passed on to Nick, we had to begin the testing necessary to determine if the FAP was active. It was determined, at the age of 10, that it was already very active in Nick's colon. Nick had surgery to remove his colon (again standard procedure). That is usually all that needs to happen to stop the advancement of FAP, since it normally is confined to the large intestine (aka colon). As time passed and I do what I do (which is research), I learned that a link had been found between the rare liver cancer Nick had as a baby and the presence of the FAP gene. I also learned that it could be an indicator of the FAP being more aggressive.

I took that information in and decided to leave it alone. Keith and the kids didn't need to know, because nothing had been confirmed. Nick's oncologist did not wholly agree with the findings and I was okay with that.

A few years ago, Nick had a mass show up in the small intestine. A scope was done and Dr. M was able to see where the mass had been, but the mass was gone. POOF! Keith and I knew that God had healed Nick. We didn't think anymore about it. I was okay with that too. Keith was so very sick. Nick was still having to go to Birmingham every month for his immune system issues. I was okay to let it be. We had enough to deal with...

During the last 2 months, we have found another mass, scoped it, removed as much of it as possible without endangering Nick's life, found more polyps, removed them, did another scope to see if more polyps were in other areas, and found them. All of this while Nick has still been receiving chemotherapy for the PTLD/lymphoma, which is a completely separate and unrelated disease.

In Dr M's 30 years of experience, he has never seen a case like Nick's.

At the time of our conversation, he was in the process of making contact with Nick's oncologist. These guys are trying to form a plan, except there isn't much of a plan to form. The disease has no cure. When FAP is aggressive and begins to attack the small intestine, there isn't a whole lot that can be done.

Dr M told me about a specialist in Columbus, Ohio, that is one of the leading doctors in FAP research and treatment. I have researched this guy. I have looked at the procedures he has developed in order to try to maintain a quality of life for people with this aggressive form of FAP. One main procedure is called a Double Balloon Enteroscopy. It works similar to other balloon procedures that are out there for heart blockages, etc. A balloon is inflated to open the small intestine wide enough for the scope to pass through. Once the scope is at it's furthest point in the opening, a second balloon is moved in place and inflated, while the first balloon is deflated. The doctor also places permanent tattoo marks on the lining of the small intestine to mark where the scopes have been. The balloons and scope inch their way along through the small intestine scoping, removing polyps, and tattooing.

That is the extent of what I know about the procedure without actually speaking to the doctor who performs it. I have watched a video he has available and read through his findings.

I believe I can safely assume a few things without having this new doctor confirm them. #1: This procedure is risky. #2: This procedure is very time consuming. (20 feet of intestine and only being able to move in inches!) #3: That means a lot of time under anesthesia. #4: One time isn't going to get it. If it did, why the need to leave a trail of tattoo marks?

I do know that one thing mentioned in this doctor's information is that the goal is to maintain a quality of life, while trying to prevent the polyps from becoming so large to cause a blockage and/or turning into cancer.

That is fighting a losing battle. Eventually the polyps will cause a blockage, become cancer, or what happened to Keith...

I know that this is a lot of information. I hope that I have made it as easy to understand as possible. I'm sorry if it isn't.

I have not told Nick or Kacie the extent of what I know. All I have told them is that Dr M found some polyps, but they are small. Neither child needs to carry this burden. Keith and I always practiced NEED TO KNOW ONLY information with the kids. We didn't lie to them, but we didn't always tell them everything we knew until it became absolutely necessary. I am following this same procedure.

PLEASE DO NOT share any of this with either of my children or their friends. I want to allow the kids to finish the school year without this burden. I will share with them only what they need to know when they need to know it.

I don't know what to ask you to pray for. I know God has Nick, Kacie and myself in His hands. I know God has a plan, even if the doctors don't. I know that God is still in the miracle business. I know that God can heal Nick if it's HIS will. I know that Nick is God's child. I know that I am praying for God's will to be done. Accepting His will is the hard part.

My mother's heart has been broken all week. I am struggling with the overwhelming knowledge of what all of this means for Nick and my family. I am struggling without Keith here to help me make decisions. I AM LEANING ON GOD TO GET ME THROUGH EACH AND EVERY SECOND OF EACH AND EVERY DAY!

Thank you for your patience and your prayers. Please don't hesitate to ask me any questions. I'll answer them to the best of my knowledge. Thank you for respecting my wishes concerning the kids. Thank you for helping me carry this burden.

As always, we remain...


Kristy Baxley

P.S. I will NOT be posting this update on Facebook. If you know of someone who normally reads my updates via Facebook, please forward this email to them, private message them on Facebook (especially if you are friends with one or both of my kids), or send them here to my blog ( Both of my kids are on Facebook and will have access to this email if it is posted there. It is posted here without any links to Facebook. Thanks!

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