Saturday, April 30, 2011

Baxley family update 4/30/11

Well...we are safe. There were 6 tornadoes that passed between 1/4 mile to 2 miles from my house. There is no damage to my house or my immediate neighbors homes. My neighborhood actually sustained very little damage. There is some debris (leaves, small limbs, insulation) that we've found. We aren't sure where the insulation is from, but there is a neighborhood that was just about completely wiped out just a few miles from my neighborhood. There were a couple of deaths in that area as well. I imagine the insulation is likely from that area.
We are going on 4 days without power. It has been a challenge to learn how to live without power. Thankfully, a few couple of us either have a generator or have been able to borrow one. That has provided enough power to two-three refrigerators to feed 6 families (total 18 people). I'm doing most of the cooking since I have the biggest gas grill.

My neighbors are all pulling together and we are sharing resources. No one has gone hungry. We have had hot meals twice a day. Different families are venturing out for supplies each day. We have even had some hot water for a bath. Just takes a little more effort.

God is providing EVERYTHING we need, and a few of our wants as well.

It is amazing how a situation like this makes you realize exactly what is important and what isn't. I stand amazed at how God is using such a huge tragedy to bring people together.

My family is so blessed. I think it is safe to say that my neighbors would echo that too.

Now that I have my land line back up, I can have internet occasionally. I'll try to update again soon.

Also, for my extended family: Mom and Kim and her family are fine. From what little bit I have been able to speak with them, their homes haven't sustained any major damage or any damage at all. I think one of the out buildings at Kim's house was damaged. I know that mom, Kim, and Adam are having to work.

Nick is feeling pretty good. No major side effects from the surgery or the chemo. Kacie is feeling good too. I am tired.

We covet your prayers. Please pray for the families that have suffered so much loss. Pray for the relief workers who are trying to get help to the people who need it. Pray for the people who are working around the clock to get our power back on. Pray for continued safety for these workers.

It is looking like Tuesday, May 4, before we may have power back. Pray that supplies can hold out. Every time we start cooking and the families begin to come over to eat, I wonder if there will be enough food, then we have leftovers! I have thought so much about Jesus feeding 5,000 with the loaves and the fishes. We are not feeding 5,000, but having faith that God will stretch everything to feed everybody is awesome. Watching God do it is even more awesome.

We are certainly...

In His Grip!

Kristy Baxley

Monday, April 25, 2011

Update on Nick 4/25/11

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.

Wednesday, April 13, 2011

20 years ago

Sometimes I wonder how the brain has the capacity to remember certain events in such minute detail. Today has been a day where my brain has been full of details and memories that are sweet, yet heartbreaking.

It was 20 years ago today that I met the man I would fall madly in love with, have two children with, and share more than half of my life with. April 13 was when Keith and I met in person for the first time. We had been talking on the phone for a week, maybe two.

April 13 was the first time we actually saw each other face to face. was a blind date. I always thought that I never believed in love at first sight. After meeting Keith, sharing a pizza, and talking long hours, I KNEW he was the man I would marry.

I fell and I fell hard. I think he probably did too. is one of those bittersweet days when my brain is full of wonderful, sweet memories, but my heart is breaking a little more that Keith isn't here to share this day with me. Although, I do realize that if he were here, neither of us likely would have paid much attention to this particular day.

Friday, April 8, 2011

Update on Nick 4/8/11

First things first...Praise God from whom ALL blessings flow!

Yesterday, Nick and I were in Birmingham for another checkup, IVIG, and CT scans. The chemo is on hold for a couple of weeks to give us a break during spring break.

The CT scans showed that the chemo is working! PRAISE GOD! The spleen looked completely clear of any cancer spots. The big mass in the lower right pelvis has shrunk to half of it's original size in January. These are such HUGE praises. This set of CT scans is evidence that the chemo is working very well and the we should continue forward as planned.

Next praise...Nick's IGG level is completely normal at 915 for the first time in 4 years! PRAISE GOD!

What does this mean? It means that the consistently higher doses of IVIG are finally stockpiling and Nick's body is able to hold some in reserve. It does not mean that his immune system is suddenly functioning normally, although if we all prayed for healing to that end it is certainly possible if it is in God's will. That was actually my first thought yesterday when we got the lab results back! The nurses were rejoicing with us.

Nick still received another high dose of IVIG yesterday, along with bunches of steroids to hopefully preempt any kind of reaction this afternoon that has landed us in the ER for blood work and total stress in the past.

I will try to explain why Nick received IVIG yesterday even thought his level was perfectly normal.

So... imagine Nick's immune system like a bucket that has a leak in it that can't be fixed. No matter how much water (IVIG) is put in the bucket, it keeps leaking out. Over time, the bucket will be more empty than full unless some kind of change is made to the water source. If the water source is increased and the bucket is kept as close to overflowing as it can be, the water level inside the bucket doesn't decrease as much as before. It may not even have a noticeable decrease in the volume of water. As long as that water source is kept consistent, the level of water will likely be maintained in the bucket even if some water is still leaking out.

The hope is that we have finally reached this point with Nick's IGG level. With the continued increased doses of IVIG, his leaky immune system is finally able to stay more full than empty.

I hope that makes sense. It sounds good in my head. If not, forgive me please. Reply back and I will try to explain it in a different way. I am so very tired this morning.

The rest of my news is a praise, but there is some of it that is difficult to deal with.

The praise first. What was thought to be a mass at the base of Nick's stomach/upper portion of his small intestine is not a mass. Praise God!

I, more than anyone do not want to take away from any praise that God grants us.

Here is what we do know: There is something located there. The something is actually a polyp located inside the intestine in the lower portion of the duodenum (pronounced: due-ah-den-um... I think), that is the name of location of the upper portion of the small intestine below the stomach and is shaped like a C.

It is another PRAISE that this was able to be seen this clearly on the scans. In past scans, it was seen and thought to be outside the intestine pressing against it. Therefore believed to be the PTLD/lymphoma.

What does this mean? This means that the cancer causing genetic condition (aka Familial Polyposis/FAP) that Keith had and Nick has, is rearing it's ugly head again. This condition is what caused the cancer that Keith died from. This condition was passed down to Nick and has caused numerous problems for him. We had hoped that having some preventive surgery 5 years ago would stop this disease, but in Nick's case it hasn't. With each instance of polyps occurring in the small intestine, there is increasing belief that the version of the genetic disorder Nick has is more aggressive.

Ok...we have been here before. Just a short time (maybe a year, maybe less) before Keith died, Nick had one of these polyps show up. The GI doc scheduled surgery to scope Nick and possibly remove the polyp. The procedure was risky and there were surgeons on call at the time of the procedure due to the risk of the intestine being punctured and Nick needing emergency surgery to make an immediate repair before death occurred.

This is the same type of scenario. Nick's GI doc has already been notified of the findings. He will be looking at the CT scans himself, maybe today. There will be a plan made for scoping, biopsy, and removal (if possible) in the coming days. I will be notified next week of the day and time of the procedure. There will likely be more than one scope done in order to look at as much of the intestine as medically possible. Due to the risks involved with Nick, everything will take place in Birmingham.

Last time, God granted us a miracle. The GI doc got in there and saw where the polyp had been located. The polyp had disappeared. The doctors said things like: "It broke off and passed on through the bowels.", "It ruptured, and Nick's body reabsorbed it.", etc.

We KNOW what happened. We all prayed for a miracle and God granted us one. God made that polyp go away. The doctors still can't really explain what happened. It's okay, because WE KNOW!

I'm asking everyone to please pray specifically for God to heal this polyp once again. He is the Mighty Physician and Healer.

The oncologist wants the procedure to take place before the next round of chemo. The chemo has been put off a couple of weeks so that the kids and I can have a spring break. You know...time off for good behavior. The flip side is that the chemo doesn't need to be put on hold too long since it is working like gangbusters on this cancer.

The most likely dates of the procedure will be the week of April 18, probably being either Monday the 18, or Wednesday the 20. Chemo will follow as soon as possible, maybe even the day after the procedure.

There is also another prayer need. The mass located behind Nick's belly button has not changed in size at all during the chemo. It is now necessary to get a biopsy of that mass to see what it is. It is possible that the biopsy may be taken at the time of the other procedures, but it sounded like the intestine thing has taken precedence over this. So, it may be a little while.

There is also the possibility that Nick will need to have a bone marrow biopsy done to check for the presence of iron in the marrow. Nick is showing signs of iron deficiency but the oncologist is not certain of the cause. There is a lot of information surrounding this issue that I'm not going into, because it too is on the back burner as well. I'm putting it out there so that you awesome prayer warriors can pray about it.

The oncologist has made some oral medication changes that will hopefully allow improvement. It is also possible that the iron deficiency is due to some blood lose caused by the polyp in the small intestine. It's baby steps. Maybe one fix will lead to others.

I know this is a lot to digest. I'm not fully certain that I've gotten it all straight yet. I wanted you all to know as soon as my tired mind would let me form the words though.

Thank you very much for the continued prayers and support. We could not walk down this road without you.

I don't know how we are emotionally. I'm desperately trying to hold onto the praises.

Pray, pray, pray

As always, we remain...

In His Grip,
Kristy Baxley

Sunday, April 3, 2011

Hey...Guess What?!

*****Disclaimer***** I do not know what is wrong with this blog. I have tried everything I know to edit it so that it is in paragraph form. Any advice is appreciated.......... This isn't going to be a post about grief...well not in the same way that I have talked about grief before. For the first time, in longer than I really want to admit, I am feeling pretty good both mentally and emotionally. It's amazing when your body is more chemically balanced how much better you feel in every aspect: mentally, emotionally, spiritually, and physically. I have been able to see some healing of my grief that has taken place and is still continuing to take place. I really don't think I would have been able to see this healing without getting the depression under better control. I wish I had taken MLC's* advice sooner... *My Lovely Counselor What have we been up to? Other than the regular stuff (school x 3, homework x 3, dance, counseling sessions x 3, church, and Birmingham visits), I am encouraging (sometimes pushing, shoving and dragging them) the kids to try new things. These are things that I had the opportunity to do as a child because of where my family lived. I realized a few weeks ago that my kids haven't had some of these same experiences, and they need to have them. I also realized that we haven't done many things that are fun since Nick started chemo. We've been busy, but how much of it was fun? Hmmm..... So, after some advice from a friend or two, the kids and I are trying things that are new to them. Things that I have done before, but before falls into the category of 20 to 25 years ago. Man that makes me sound old! Yesterday was our first real go at new. We went hiking up on Rainbow Mountain. I had a good friend that hikes there often to show us the way. It was a great experience. Kacie is the girly girl Keith and I always believed her to be. Nick took off like gangbusters climbing rocks and leaving us girls in the dust. We had a great time. We came home tired, but relaxed. We have sore muscles, but quieter minds. I learned that my son, who seems content to always follow, likes to be in the lead sometimes too. I learned that my daughter is tougher than she looks and acts sometimes. I also learned that she is more like me than I really thought possible. I understand that this may not seem like a big deal to a lot of folks. It is to my family though. We have spent so much time surviving that I forget that we need to live some too. Living needs to be fun and different too. We've been doing the same things that we did before Keith got really sick and then died, but I had not thought about doing other things. Things that I never considered doing because of Keith's going on a hike or having a friend teach Nick to skateboard. We did that too this weekend. :-) Nick has a natural ability for skating too. He only fell once. I think I did great too. I didn't run to him to check on him. I walked to him while casually observing him for injuries. He just had a little pavement burn on his shoulder. The elbow pads took the brunt of the blow. That's what they are there for! We are going to take a trip to the beach during the kids spring break soon. It will be the first longer trip back to "our" beach since the trip 3 weeks before Keith's death. I took my mom and the kids last May for a weekend as a birthday present for my mom. We haven't been back vacation style though. This will be another first of sorts. I have a very close friend going with us. I am so thankful for her and my other "sisters" that have accompanied us on our many trips to Birmingham or on trips for fun since Keith's death. I think it is safe to say that we are slowly finding our way through this new life we didn't ask for or want. God is continuing to see to our every need in every way. God is good all the time. All the time, God is good. I am finally beginning to be able to see that light at the end of the tunnel. It may be a train, but it probably isn't. The best part is if the light turns out to be a train, we just step out of the way, wave it on by, deal with whatever it leaves behind, and then we MOVE on. Not every light is a train though! I love not only knowing that, but also believing it. Hope this finds you all well. There will be another update later this week. Nick has CT scans on Thursday.