Monday, May 30, 2011

The path not taken

I heard on a radio talk show recently that some non Christians believe that the life of a Christian is quite easy. The discussion quickly turned that theory upside down and inside out. The life of a follower of Christ IS NOT EASY!

Some non Christians think that as followers of Christ, we are given this life that has no problems, no worries, and an iron clad guarantee of the "perfect" life.

How wrong they are...

I know first hand, as many other's will also confess I'm sure, that being a Christian is very difficult. I feel like I am constantly at war with sin and the temptations that come with living in a sin filled world. I struggle with maintaining a strong relationship with God that isn't filled with a bunch of whining about how bad things are and why won't He change them. Don't get me wrong now. I do go to God with all of my whining and complaining, but I have to try really hard to remember to praise Him and thank Him for the infinite blessings He has given me. I have to try really hard to remember to thank Him for NOT giving me my way. I have to try really hard sometimes to keep the little girl that still lives inside of me from stomping her foot, crossing her arms and holding her breath until she gets her way. She has no place here. That is how I feel sometimes though, especially when I long for something and it simply isn't in God's will for me.

That's how I feel when I am faced with choices that I KNOW are NOT God's way, but it's something that I want. I struggle with making the choice that I KNOW God wants me to make. I struggle with letting go of the worldly or human desire to have my way, especially when it's something that I have longed for. I struggle with accepting that while it may be in God's will for me some day, today is not the day.

I don't like being told, "No"...or "Not right now"...or "We'll see"...or "Maybe later".

I am still that little girl who wants to throw a temper fit when she doesn't get her way. I really don't like admitting that. I really don't like acknowledging that part of myself.

It is hard to choose that path that God wants you to take. It is even more difficult to keep facing forward once you have chosen God's path. All I keep doing lately is looking back at the path not taken and wishing I had taken that path instead. Even though I KNOW I chose the path God wanted me to take!

So frustrating!

Remember that story of Lot's wife... God instructed them not to turn around and look back. Lot's wife did and she paid for her disobedience.

I need to stop looking back. I need to look forward and keep my eyes trained on God. The looking back at the path not taken isn't doing me any good. It is causing me unnecessary heartache. It is causing me to doubt that God has a plan for me: a plan that is full of hope and a future.

I have to steel myself against the temptations of the path not taken. I am finding that, even though I didn't take that path, it is running parallel to God's path. The more times I look back at that path, the closer it seems to get. Sometimes, the path not taken seems to be just a step to the left or a step to the right. It would be so easy to step off of the path of God and step onto the path of What Kristy Wants instead.

What keeps me from stepping onto Kristy's Way? Right now, the simple knowledge that I would be disobeying God. Would you ever admit to praying for God to give you permission to sin? because it was something you wanted so badly you thought you would simply come apart if you didn't get it?

I'll admit to it. I realized as I was praying this completely human, flesh-filled, selfish prayer, that I was asking, even begging, God to give me permission to do something I knew was wrong in His eyes. Guess what?! There is nothing like God bringing you to your knees (and senses) when you are wholly in the flesh when you are praying. I don't know that I have ever felt so ashamed before God as I did when I realized the truth about my "prayer".

I do know that I don't ever want to feel that way again. I also know that it is a struggle to accept the forgiveness that God gives freely when asked for it. I also know that living the life that God calls His children to live is very difficult. It seems to me that the temptation to take the path of... "least resistance", or "my way", or "this is something I have longed for", or "I'm only going to go this way for a little while", or WHATEVER our human flesh wants to call it to make us feel better about disobeying God... is always going to be there. The struggle is not only making the choice that God would have me to make, but also trusting Him enough with my choice so that I don't keep looking back.

I know this is coming out of left field, but it's something that has been on my heart for a while. I am finally ready to follow another one of God's paths and share this struggle. Maybe now He will let me be at peace about some of this.

We may not know where God's Path will take us, but we do know where it WON'T!

Monday, May 23, 2011

How's life been?

Life during the past week has been tough. I am still continuing to come to terms with last week's medical news about Nick. There are times that I simply can't comprehend that everything has turned out the way it has. I remember feeling this way for the first several weeks after Keith died. It's just a part of the whole process.

I don't know how well I am actually coping with everything. I have been very tired every day. There are still times when I just feel so helpless and worn down that all I can do is cry. There have been numerous times when my mind spins out of control and my thoughts go places that I have no business going to (i.e. funeral planning). Yes...that has happened. I have learned to pray for God to shield my mind and protect my thoughts as soon as these times happen. Another tip from my wonderful counselor. :-)

I'll be checking in with him in the morning. I suppose then I will find out how I am coping.

I really think that I have moved into the place of hands over my ears and singing lalalalalalalalalalala as loudly as I can, while my eyes are squeezed tightly shut. If I can't hear it and I can't see it, then it must not be real.

Would you be surprised to know that I used to do that when I was a kid? When I didn't want to hear or see something that someone (other than my parents or other grown up, because if I had done that with one of them I would have had my rear end torn up!) was telling me? Especially if that certain someone was one of my siblings?

I are stunned. No way that would have been me right?! Yeah, was. I guess that little girl is still deep within me since that thought comes to mind occasionally.

This is random, but one of my cabinet drawer fronts broke off tonight. Kacie brought it to me with the most bewildered look on her face. She was very quick to tell me that she only opened the silverware drawer, and she didn't do anything to it. I had to smile at that. Of course she didn't do anything. After 13 years of use, it's finally just worn out. It's just another reminder that I REALLY do not like my kitchen cabinets, yet I can't afford to replace them.

I looked at the drawer front. Then looked at it some more. Thought about crying. Decided not to cry. All it needed was some glue. I could fix that. Then I got to looking closer and saw that some pieces were broken off. The wood was splitting. Nails and staples sticking out. I decided I probably should call someone who knew more about this stuff than me. I called my wonderful neighbor. He came right over. He said no problem. He would get it put back together and have it back some time tomorrow. Then I really wanted to cry.

I still do and I still might. It's another one of those things that happen around the house that Keith would have taken care the drain I had to take apart last week, or the door knob that needed replacing last year, or the yard work (weed eating and edging) that I did Saturday and about every Saturday, or...or...or...

It reminds me that no matter how much I close my eyes or cover my ears and sing lalalalalalala, Keith is gone. Life can be very hard. The hard parts of life can last for a very long time.

So, in answer to my own question: "How's life been?" It's been a tough week and this week is looking to be about the same.


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!

Thursday, May 12, 2011

Update on Nick 5/12/11

Nick and I were in Birmingham again yesterday (Wednesday, 5/11). We went on Wednesday this time, because we were able to schedule the pill camera endoscopy to take place while Nick was receiving chemotherapy and IVIG.

It meant that yesterday began with waking up at 4:00 AM and not getting home until 7:30 PM, but the benefit was not having to make a special trip for the 8 hour pill camera procedure.

The pill camera procedure is probably the least invasive scoping procedure I know of. The most difficult part of the procedure is the dietary change Nick has to endure for about 24 hours: clear liquids from early afternoon the day before the procedure to NPO (nothing by mouth) after midnight until two hours after the pill swallow (about 10 hours total). Then he could have sips of clear liquids again. At the four hour post pill camera swallow mark, Nick was allowed to have some pudding and the broth off of chicken noodle soup (but no noodles). Then he was just maintaining by sips of clear drinks until the pill camera finished it's journey (which was at 2:45 PM).

As soon as he was given the "all clear", he ate and ate and ate. Bless his heart. It broke my heart to have to be the "enforcer", especially while he is sitting there being pumped full of chemo and IVIG. Such is my role in his sweet life though...

There isn't anything new to report from the visit with the oncologist yesterday. He is seeing some small improvements in Nick's red blood cell production. Hopefully that trend will continue. The root cause was likely the polyps that were found during the scopes three weeks ago. Nick is taking about 1000 mg a day of iron supplements in order to treat and correct the problem with the red blood cell production.

CT scans are scheduled for June 2. These are very important scans. Nick is reaching the end of his scheduled chemotherapy protocol. As of the last set of scans, the PTLD/lymphoma still had not gone into remission. It really needs to be in remission by the time these next scans are done. Usually there is a certain amount of chemotherapy that takes place once the cancer is in remission. There are still just too many unanswered questions right now...

Nick will either have his IVIG infusion OR chemotherapy on June 2 once the CT scans are finished. We have already figured out that there just are not enough hours in the "clinic" day to do everything. That means we will be making a second trip within the following week for whichever infusion Nick does not receive on June 2.

There will be another update to follow as soon as we get the results of the pill camera endoscopy. The GI doctor said that it could be as soon as today, but the GI nurse said it could be as late as Monday. I am going to work really hard on NOT worrying over the findings during these next few days.

What are the doctors looking for? Mainly polyps in the sections of the small intestine that can not be reached with traditional scoping procedures. Since it has been shown that the Familial Polyposis (FAP) is present in the upper and lower regions of Nick's small intestine, the doctors all feel like it is necessary to try to see how much more of the small intestine could be affected.

My prayer is NONE!

There are lots of prayer requests in this update. I'm not going to take the time to point them out simply because I am exhausted and a bit overwhelmed. The last month has literally worn me out. So...please pray as God leads you.

I will update as soon as I hear something from the GI doctor.

God bless you all.

In HIS Grip,
Kristy Baxley

P.S. Nick felt well enough to go to school today. Kacie did great with her Nana and Pawpaw while we were gone for so long. These kids continue to amaze me!