I got a phone call this morning from Nick's oncologist with the preliminary pathology results from all of the biopsies that were taken last week. So far, everything is benign. The oncologist does not anticipate that any of these findings will change upon completion of the pathology. PRAISE GOD!
The pathologist and the oncologist both believe that these polyps are indeed from the genetic condition.
Some background info on the genetic condition. It's called Familial Adenomatous Polyposis (FAP). It is a usually very dominate gene mutation that is passed down from parent to child and showing up in at least one person in each generation. In our case, the gene can not be found in anyone before Keith. The development of the mutant gene with Keith is called a "spontaneous mutation". It is something that just happened during the forming of Keith's DNA. The mutated gene was passed down to Nick.
The FAP typically causes the large intestine to become covered in polyps. If the polyps are not removed, they will eventually take over the large intestine and turn into cancer. The FAP gene has a 100% chance of causing cancer. There isn't any way around that. It WILL become cancer.
We did not find out about the gene with Keith until it was already cancer. That cancer is what Keith died from. It spread from his large intestine to his liver and lymph nodes. Then to his lungs and abdomen. Then finally his brain.
Once we knew about the FAP, we had further gene testing done and found out that the gene had been passed down to Nick.
This is where things begin to get tough for me. I'm going to do the best that I can in trying to explain this, so bear with me.
This FAP gene has been found to show up in some children as hepatoblastoma...the very rare liver cancer Nick had as a toddler. At the time of Nick's diagnosis (1995), the research on hepatoblastoma just showed that the rare liver cancer was something that just happened. Since then, other research has found a small percentage of a genetic link to FAP.
Another symptom of FAP is the development of polyps in the small intestine. There is a variant of FAP that is more aggressive called Gardner's Syndrome. Nick HAS NOT been diagnosed with this. He has only been diagnosed with FAP. The thing that bothers me is that Nick has several of the earmarks of Gardner's Syndrome. The presence of polyps in the small intestine is one of markers. There are several other indicators, but I'm not going into those right now. It's just too much information for me to digest.
I began researching FAP and Gardner's Syndrome about 6 or 7 years ago. Once I began reading about Gardner's Syndrome, I stopped researching. I just couldn't read anymore. I was tired of reading about terrible outcomes. I only researched a little bit more during this past weekend, but decided that I don't want to know anymore right now. The information I'm getting is from very reliable sources. I just don't want to know anymore.
What's the plan? Well...first thing on the list is to get Nick's iron levels increased. No, I haven't mentioned that before now. I honestly haven't thought a lot about it. Initially, the oncologist thought that the low iron levels were caused by the chronic inflammation from the lymphoma. Nick was placed on a pretty big dose of iron in November/December and it didn't help at all. It was at that point that the fevers also began and the oncologist found that the lymphoma had spread to Nick's spleen. Nick was then placed on chemo.
In patients with a chronic inflammatory disease, like PTLD/lymphoma, the body will cease to use iron. Iron is needed to produce red blood cells. Nick's body is producing the red blood cells, but they are very small in size.
Since Nick started chemo, his iron levels haven't increased the way that the oncologist had hoped. It was also found that Nick has been losing small amounts of blood. In trying to figure all of that out, the last CT scans showed that there was a large polyp inside Nick's small intestine. That immediately drew attention to the FAP as being the possible cause of the the blood loss and iron deficiency.
That has not been ruled out at this point. A decision hasn't been made pointing to the numerous polyps being the cause of the blood loss either. There is still much more for the doctors to discuss.
Nick will be having a procedure done with a pill camera soon. It hasn't been scheduled yet. He's had this done before and really isn't bad. He just swallows a large pill and wears a harness that contains a recording device for about 8 hours. The pill camera takes pictures as it makes it's way through the small intestine. This will hopefully allow the doctors to see if there are any other polyps that need attention. That is important since each and every polyp WILL become cancer at some point.
Another item that will be addressed soon (again not planned yet) is a mass that is behind Nick's belly button. It is located in a strange place for the lymphoma. It is not in a location that would be a polyp. It does show up on PET scans and CT scans. The oncologist thinks that it is entirely possible that this mass could be a pocket of infection that has become encapsulated and isn't bothering Nick. This could very well be the case since it is in the same location of the post operative wound infection Nick had almost 6 years ago.
As far as treatment for the FAP, there really isn't any. Sometimes an anti-inflammatory medication can slow down the growth of the polyps. Nick has been on those for several years. That medication could also account for the blood loss when combined with all of the chemo and steroids he's had to be on lately.
The main preventative treatment for FAP is removing the large intestine. That's already been done. Since the polyps are showing up in the small intestine, I don't know what the doctors will decide to do. The human body can not live without the small intestine. That is where the body gets nutrients from food. So, it can't all be removed, but there are several feet of intestine. I just am not certain of the physical impact on the body if portions of the small intestine are removed, especially Nick's body that has already been through so much.
I know this is a lot of information to digest. It's taken me several days to get to this point: a place where I can even try to explain what I know, but the doctors don't even have any real answers either.
The things we know is that Nick has FAP and has for years. Nick is on his third battle with cancer. FAP will cause cancers other than the lymphoma. We may be able to cure the lymphoma, get his blood and iron levels within normal ranges, get his immune system boosted, BUT we won't ever be able to stop the FAP from turning into the cancer that took Keith from us. Not without a miracle. I am concerned at how aggressive Nick's version of FAP seems compared to Keith's. We didn't even know anything about Keith's until he was 33. We've known about Nick's for almost 6 years. It seems to be getting more aggressive as time goes by. That worries me.
I'm going to end here tonight. I'm tired and it's getting late. Please be respectful of the fact that Nick and Kacie do NOT know the whole of all of this. They don't need to know. It won't do any good for either of them to know this stuff. I don't think it's done me any good knowing it.
Please continue to pray sweet friends and prayer warriors. Only God knows what His plans are. Pray as He leads you too.
In His Grip,
Kristy Baxley
PS...if there are questions, email me or call. I will do my best to answer them.
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