Part 2 of Update on Nick Baxley from 3/17/11

Thank you all so very much for covering us in prayer during this last week. Thank you for respecting my request to pray as God led on faith that He knew (and still does) what the kids and I needed.

Last week, Nick's oncologist spoke with us about a bone marrow transplant. He has mentioned this a couple of times in passing, but this time he made it official. The three of us discussed it for over an hour. Nick and I have a huge decision to make.

The oncologist wants us to consider this, because he believes, without a miracle, this will be Nick's only chance at having a normal adult life.

There will have to be a lot of research and investigating done prior to the actual transplant. While we didn't get into specifically who would be on the panel of doctors, I did some calculating and came up with between 7 - 10 specialists. That many doctors would be necessary because of Nick's numerous medical needs. I realize that there is a lot of information in this email, but I do want to share as openly as I can about what we are facing and why. I don't think I have ever given a list of ALL of Nick's medical issues. I'm not going to do that right now either, but that is where my thoughts on who would likely be on that panel of doctors comes from.

So, who do I think it would involve? 1. Oncologist 2. Bone Marrow doc (this may be a Radiation Oncologist, but I'm not sure) 3. Cardiologist (for consult purposes since Nick received some chemo that can damage the heart over a long period of time) 4. Geneticist (to consult on the effects of the transplant process on the cancer causing genetic condition that Nick has and Keith had) 5. Nephrologists (kidney specialist to consult since Nick also has long term kidney damage from chemo) 6. Gastroenterologist (because Nick's genetic condition causes gastro issues and Nick only has a small intestine) 7. Immunologist (doctor who specializes in immune system disorders; present likely because of the current state of Nick's immune system) 8. Liver transplant specialist (the effects of a bone marrow transplant on a previously transplanted patient can be very dicey).

That's eight specialists folks, and I'm stopping there because seeing it all in writing is beginning to overwhelm me and I really want to finish this. Plus it's nearly midnight and I'm getting tired.

Why a bone marrow transplant? Nick's immune system is continuing to have a lot of dysfunction. The basics as I know them: The bone marrow is where the cells for the immune system are produced. The basic immune cells are in the white blood cells (WBC). These two basic immune cells are T cells and B cells. Both have specific jobs to do with fighting infections and keeping the immune system strong. With Nick's chronic health problems and needing lots of medication/chemotherapy that causes these specific blood cells to be decreased, his bone marrow is no longer functioning properly. Nick's bone marrow is not producing very many B cells at all. This wouldn't be so bad, because the T cells are there to back things up. The IVIG helps with that and everything should be fine, except... Nick's T cell's are showing a decrease in production as well. The only way to fix an immune system is to replace it. The way to replace it is with a bone marrow transplant.

What about his liver transplant? I don't know. That is one of the many, many, many medical conditions that the doctors will have to take into consideration.

How long will the bone marrow transplant take? The actual transplant does not take that long from what I understand. The length of time is in the before and after. The actual bone marrow transplant is given like an IV I think. The actual hospital time varies. Nick's oncologist told us last week that from start to finish, it would be about 1 year out of Nick's life for him to be "out of the woods". From what I remember about the liver transplant, that's about right. It took about 1 1/2 years for Nick's body to fully recover from the liver transplant and level off with the constant medication adjustments. That first year after any transplant is the most critical. I can remember our first year very well. It was one of the toughest years of our lives. I rank it up there with the past 20 months the kids and have spent trying to learn how to live life without Keith.

What about the PTLD/Lymphoma? Good question, especially since this particular cancer is a result from being transplanted. I don't know the answer to that one either. One of my fears is that the bone marrow transplant will make the cancer come back or become more aggressive since Nick already has it. I don't know if the strong chemo and radiation needed to prepare his body for the new bone marrow would eradicate this cancer. I do know that PTLD can be an issue for bone marrow recipients, as well as a myriad of other health problems.

Can Nick die because of the bone marrow transplant? Yes. The process of the bone marrow transplant is a very tough one on the body. There will be a period of time when Nick has absolutely no immune system and any kind of infection can cause death.

Can Nick die without the bone marrow transplant? Yes. Aside from an accident happening, any kind of infection could result in Nick's death since his immune system isn't functioning properly. People who have normal immune systems get sick and die every day. With Nick that risk has increased, BUT we have been living with this risk for 15 years. Nick has had some serious infections during the last 15 years that had the potential to take his life. For us, this is not a new risk.

Will a bone marrow transplant cure Nick? I don't know. The doctor doesn't know. His hope is that it would give Nick ten "good" years without needing constant infusions of IVIG or having to make monthly trips to Birmingham. As far as a cure goes, I just don't know. I know that the doctor said it's the only chance of a cure. I don't think there is any kind of guarantee though. As with any kind of transplant, you tend to trade one set of problems for a different set.

While Nick and I have not made a firm and final decision, we have come to some conclusions about what is important to Nick right now. We both feel very strongly about Nick finishing high school in the most normal way possible. It's not just something I want for Nick, but it's something that he wants. We don't have a time frame for when the bone marrow process would start, but we know that it would take even the normal we have now away for at least a year. That is a high cost to ask a 16 year old to pay when he has already missed out on so many normal kid things. Nick has just begun driving to and from school every day. He is beginning to experience the fun part of being a teenager. In two years, Nick will graduate high school. We both want that for him. Nick wants to experience as much normal life right now as he can. He doesn't want to give up a year right now.

I am perfectly fine with that.

We aren't going to say no to the bone marrow transplant, but we are going to say not right now. I am going to make certain that Nick's wants are understood. Yes, it can be said that we are choosing quality over quantity.

Nick and I have spent lots of time this past week talking out some of the details of the decision we need to make. I have been very open and honest with Nick about what could happen with either choice. The bottom line of everything for me is that God has given me 15 more years with Nick than the doctors believed we would have. Every day that Nick experiences is a blessing. I don't forget that. I want Nick to be able to experience as much of his junior and senior years of high school as he can. Those were my favorite years in school. I feel like Nick has earned the right to be able to say what he wants to do.

That's it for tonight. It's now 12:35 AM and I am tired.

Please continue to cover us in prayer. Cover Nick's doctor in prayer. I haven't talked with Kacie about any of this. I've decided she doesn't need this burden right now. Please try to be cautious when she is around. The idea of Nick being in the hospital long term brings up a lot of bad memories for her. There is no need for to bring all that up right now.

Please feel free to ask me any questions. I will answer them to the best of my ability.

In His Grip,
Kristy Baxley

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Quick Update on Nick 3/17/11

This is quick. I'll fill in the rest once I can think through things more.

Nick and I were in Birmingham today for his checkup, labs, IVIG, and chemo.

Nick's labs were good.

The checkup was good.

His port didn't want to work again and we had to use the clot buster medicine again.

The IVIG and chemo went in fine.

Nick's tired, but so far so good on the nausea. I'm praying he can make it through the night and the weekend without being sick.

His hair is letting loose a little bit. Cover his sweet head in prayer. He wants to have it cut down further this weekend. I'll see if it's possible to make that happen.

Now...We need lots of prayer for guidance, clarity, wisdom, and whatever else God leads you to pray for. The oncologist told us his thoughts on Nick's long term prognosis with not only the cancer, but also the immune system disorder. The plan is a REALLY BIG deal and requires a HUGE amount of faith. Just thinking about the logistics of everything is overwhelming for me. That has to increase exponentially for Nick. There is also a lot of responsibility about decision making on him as well.

That's all I am saying right now. I haven't talked with Nick at great length about today. Kacie knows nothing about this. I don't want to talk with her until after Nick and I have talked it out.

Please pray. We need all the prayer warriors surrounding us as we try to sort everything out. We also need Satan to stay away during this process.

More later...I promise.

In His Grip,

Kristy Baxley

Changes, changes, and more changes

Most everyone that knows me knows that I do not like change. I am the person that does not move furniture around. When I do, I have to force myself to live with it for a while because I immediately don't like it. Once I've lived with it for a while, I like it. That's just a part of who I am. I am someone who doesn't like change. My life isn't very easy for someone like me. My life is constantly changing and sometimes very drastically in a very short amount of time.

If you've been a long time reader, you know that I haven't changed the profile picture in a very long time.

I finally changed it. Yes, I did change it to a picture of Keith's grave marker. I don't exactly know why I chose that picture. I think a part of the reason is that I needed to make it public. I know that doesn't really make a lot of sense, but I do think that posting that particular picture on my public blog brings another level of acceptance for me. I also want to share it with friends who haven't seen it.

The phrase on the marker, "It is well with my soul.", is not something that is usually put on a marker. Usually there are phrases describing the deceased person's life, but I didn't want Keith's marker to be the usual. I wanted it to speak more about the life he lived.

He lived a very faith-filled life. In the midst of everything that wonderful man endured, his faith never wavered. Never once that he let me see. I put "It is well with my soul" there, simply because his soul is well. His soul is at home. Keith wanted to share his faith and belief in God with the world. I felt like this was one way that I could do that.

What else has been changing? My goodness...everything. Nick is an independent driver. That is a huge change. I've had to let go and let God keep that child safe. He hasn't driven very often by himself mainly because the school he goes to has run out of empty parking slots.

Another change today was that I let Nick drive Kacie. Can we say S-C-A-R-Y?! Whew! Letting what is most precious to me walk out that door together...tough. I just prayed for God to go with them and protect them.

The reason they were going out with Nick driving and me staying a home is that I have not felt well at all today. I believe that I may be getting a stomach ulcer. No surprise there.

Anyway...we needed some groceries mainly for Kacie's lunch this week. I let them go grocery shopping for me. I know! I can hardly believe it myself. I let them go and take care of it for me. I wrote out a list, gave them money, and let them go. That's a BIG change for me. They both felt very proud to be able to help me when I'm not feeling well.

So, I'm working on adapting to this new life that I certainly didn't ask for. I am trying to be easier about accepting these changes. I guess it's a sure sign of my grief healing.

That doesn't mean that I'm totally better. It doesn't mean that I don't grieve anymore. It simply means that the pain isn't as cutting every moment of every day like it has been.

Armor

This past week was a tough one. Along with the usual stuff, I had to take care of some business still left undone from when Keith died. Part of the business I had not done because there just wasn't a need until now. Another part was business I had tried to take care of a few times, was not treated very well, and left without taking care of my task.


I really was not looking forward to getting this business done. My past experiences with the customer service people involved in getting the business completed have not been good ones. Every other business task I've had to take care of, because of Keith's death, has been fairly easy to handle. I just could not understand why these two particular tasks were so difficult.

Anyway...In trying to gear myself up for the meetings and anticipating having to deal with difficult people, I found myself putting on my girl armor.

Girl armor? What's that? I imagine it's different for everyone. Everyone, male or female, has some kind of routine that they go through that helps them to feel more confident when facing a difficult task. For me, it's girl armor. I put on my makeup as usual, but take more care with it. I style my hair, as usual, but take more care with it. I spend a little more time going through my dressing routine. I chose an outfit that was comfortable, yet I felt confident in. Jewelry was chosen with the same idea in mind. Perfume put on. Then lipstick. Finally, I prayed for God to go before me and prepare the way.

That's my version of girl armor.

All of that led me to remembering that God gives us armor to put on everyday as well. Armor that is far more important than anything we can put on our bodies. This armor of God protects the souls of God's children. It helps us to deflect the acts of Satan. It allows us to stand firm in the face of evil.

Ephesians 6:13-17 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God.

The armor of God that is available to His children 24 hours a day, 7 days a week. Wow. When compared to the paltry "armor" I thought I needed to help me feel confident for the business that I needed to take care of...there is no comparison.

God provides all I need to see me through every situation. The only piece of armor that I put on the other day was one that wasn't tangible. That piece of armor was praying for God to go before me and prepare the way for me.

I am so thankful for God's infinite grace and mercy. I imagine He was just shaking His head at what I was doing to "prepare" myself. Then when I finally did the only thing I should have done, He might have said, "It took you long enough."

BTW: The business was handled with a calmness and efficiency that only God could have made happen. Every single person that I interfaced with was very kind and did not give me a difficult time. Praise God!