Saturday, July 23, 2011

Update on Nick Baxley 7/23/11

Nick and I were at Children’s Hospital in Birmingham yesterday (Friday, 7/22) for the new chemo.

Thank you all so very much for the thoughts and prayers yesterday.

The many prayers were definitely answered. Nick did NOT have ANY kind of reaction to the chemo infusion. HUGE PRAISES!!!

Yesterday, Nick was given 1/2 of the regular dose of the chemo. It was given very, very slowly. The rate was 12.5 drips an hour. (FYI: The plain IV fluids Nick gets are given at 200 drips an hour.) After 30 minutes passed without a reaction, the rate was increased by 12.5. Nick made it through that first thirty minutes without any problems. His rate then became 25 drips an hour.

For every 30 minutes that passed without a reaction, the rate of infusion was increased by 12.5 drips until we finally reached a maximum rate of 100 drips an hour.

Nick made it the entire way without any kind of reaction.

He was given 50 mg of IV Benadryl and 500 mg of Tylenol before the chemo ever started to help prevent any kind of reaction. Within 10 minutes of getting the IV Benadryl, Nick was asleep. Usually Benadryl doesn’t make Nick sleepy, but at that dose, it knocked him out.

The chemo was started about 10:45 am and we finished about 3:15 pm.

My job was to watch Nick closely for any kind of reaction. I got a break to run to the cafeteria for some lunch. A clinic aide was available to come sit with Nick while I was gone. Nick doesn’t need to be left alone while the infusion is going since the reaction risk is so high. It made for a long day.

We will be going back to clinic for the next dose of this chemo this coming week...Friday 7/29. The chemo will be the full dose this time. The rate per hour will be increased as well. The risk for a reaction will be pretty high again since the dose will be doubled.

After this, hopefully the risk will go down.

Normally, this chemo is given every week for 6 or 8 weeks. The oncologist hasn’t really decided how often Nick is going to receive it though. The oncologist is also trying to make it as easy on me as possible by keeping our trips down there less frequent.

For now, I’m just taking it from one visit to the next. I’m trying not to look too far ahead. It gets very overwhelming.

There are many prayer requests once again. Some of the ones weighing most heavily on my mind are: the financial burden of driving to Birmingham every week, managing the kid’s school work with the weekly trips, Nick’s tolerance of the chemo, the chemo working, the bone marrow decisions...I could go on and on and on.

It’s been difficult these last few days coming to terms with everything and the reality that I am doing this as a single parent. That’s another prayer request. I’ve been doing “this” for a long time with Nick, but I’ve never had to do these weekly trips without Keith to help. I’m feeling pretty overwhelmed right now.

I’m going to leave it here for now. If I get to the point that I can open up anymore, I’ll write on my blog.

I’ll send out another update next week. I’ll also be posting Nick’s progress with the next chemo on Facebook like I did yesterday.

Please keep praying as the Lord leads.

Trying to remember that we do remain...

In His Grip,
Kristy Baxley

Thursday, July 21, 2011

More indepth update on Nick 7/21/11

Yesterday (Wednesday, 7/20), Nick had another checkup, IVIG, and chemo. Kacie, Nick, and I also all had blood drawn to begin the HLA typing necessary to begin determining Nick’s eligibility for a bone marrow transplant.

I was very concerned about how Kacie would do with the blood draw. She does not do well with needles. I am very proud of her. She was awesome yesterday. I put some of the numbing cream I keep on hand for Nick’s invasive needle sticks on her inner elbows. She didn’t feel any pain at all. The worst part was the tourniquet.

I don’t know how long it will take for the test results come to back. I didn’t ask yesterday.

Nick’s physical exam was fine. Nothing new. His lab results were good as well. In fact, his iron levels are just a hair below normal. His body is finally absorbing iron! Yay!

I don’t remember how much, if at all, I’ve mentioned the problems with Nick’s iron absorption. One of the issues with chronic illness, especially Nick’s version of cancer, is the body’s ability to absorb iron. Anemia results very quickly when iron levels decrease. Nick began “leaking” iron a while back. The oncologist and the GI doc believe that it has likely been caused from some small amounts of blood loss due to the number of polyps in Nick’s small intestine. The oncologist’s main concern was getting the iron levels back up.

We are finally there!!! Nick has been taking 300 mg of iron three times a day for months. As of yesterday, that dose can go down to one time a day. Yay!

Nick got the “old” chemo yesterday. The oncologist is going to give the “new” chemo, but not until tomorrow.

Yes, that’s right. We have to go back tomorrow.

The chemo drug that Nick will be getting is one that he got 5 years ago when he was being treated for this same cancer. This particular chemotherapy is known for inducing an allergic reaction when given years apart. In order to try to prevent a reaction, the doctor wants to give the chemo very slowly. It will likely take four hours or more to get this first dose. If Nick doesn’t have a reaction this first time, he probably won’t during the subsequent doses. The first dose is very critical though.

Tomorrow (Friday, 7/22), we have to be back in clinic around 8:30 am. The chemo will get started hopefully by 9:30-10:00. Nick will be given Benadryl and other medications to help prevent any kind of reaction. If a reaction happens, the chemo will be stopped. Whatever emergency measures are needed to stop the reaction will be given. Once the reaction has passed, the chemo will be restarted. That’s just the process. I know it doesn’t make sense, but that’s how it is.

What will a reaction look like? It could be anything from an itchy rash, hives, shivering, nausea, (all of which would be a mild type of reaction) to anaphylaxis (severest reaction).

Please pray for NO REACTION!!!!

Nick will be at risk during the entire infusion. Needless to say, tomorrow is going to be just a little more stressful than usual.

Nick has been feeling pretty good today. This is great. I’m glad that the chemo from yesterday hasn’t made him feel bad.

I will be updating on Facebook throughout the day tomorrow. I’ll try to get an email update out by Saturday, I hope...

There are many, many prayer requests. I feel very overwhelmed at even trying to mention them all. I’m going to ask that you pray as God leads you to.

As always, we are trying to remain...

In His Grip,
Kristy Baxley

Quick Update on Nick 7/21/11

This is just going to be a quick update. I'll get a more detailed one out later today.

Nick got the "old" chemo and IVIG yesterday. He did very well. All of his labs look good. His iron levels are just a hair below normal, which is great! It means that we can back off of the oral iron and his body is allowing the iron to be absorbed.

We have to go back to Birmingham tomorrow, Friday, July 22, for the "new" chemo.

Nick is at high risk for having an allergic reaction to this chemo, because he has had it before. It's got something to do with the way this chemo works.

Anyway...due to this, the chemo has to be given very slowly and there wasn't time yesterday.

Pray for us tomorrow.

In His Grip,

Monday, July 11, 2011

Number 19

Nineteen years ago today, I pledged my life and my love to my high school sweetheart. He pledged his love and his life to me.

Two years and four days ago, I said good bye to that man.

We really meant it when we took our marriage vows: for better or worse, for richer or poorer, in sickness and in health, forsaking all others until death do we part.

Death parted us.

We certainly endured and survived each and every aspect of our vows. We never dreamed that we would go through the struggles that we did. We never dreamed that we would have to fight for our marriage the way we did. We never dreamed that we would not live to be grandparents together.

I never dreamed that I would be a widow, even when it was staring me in the face. I never wanted to truly accept that would happen to me.

Mr. T. (one of my grief counselors) told me today to think of Keith and how he might be celebrating today. After just a quick second, I realized that, while I am sad about Keith's earthly, physical death and the end of our earthly marriage, Keith is with Christ. He has no worries of this world.

His chains are gone. He's been set free.

No anniversary present on this great earth can top that!

Happy anniversary Keith!

I love you!

Monday, July 4, 2011

The Second Fourth

Today is the second 4th of July since Keith's death.

The arrival of today means that the second anniversary of his death is only three days away.

I had a difficult time getting to sleep last night. It was actually in the wee hours of this morning before I fell asleep.

I think July 4th was Keith's favorite "American" holiday. He loved the cookouts and fireworks. The fireworks were his absolute favorite.

His love for fireworks has been passed along to Nick. It is bittersweet. I wish Keith were here to teach Nick about buying fireworks, the do's and dont's of fireworks, safety... Instead, Nick has me. I like watching them. I don't care about buying them. I don't know anything about buying them. I don't like lighting them. There's no adrenaline rush for me the way it was for Keith and apparently is for Nick.

Yesterday, Nick and I went to buy fireworks. Ok...I know that this does not sound like a big deal, but for me it was and still is a little bit.

For the majority of our time together, Keith's love of fireworks was quite obvious. His extended family lives in south Alabama and Georgia. There is a huge fireworks warehouse that is open year round about an hour or so from Keith's grandparents house. Every trip we made down there, Keith would make a visit to that fireworks store. It would not be anything for Keith to come back loaded down with a few hundred dollars worth of fireworks. Yes, you read that right. When we couldn't get down there, Keith asked his parents to buy some and haul them home.

When he went, he would be gone for hours. He knew what the best deals were for the money. He knew what kind of show each one would provide. He knew how loud the report would be. He tried to teach me. I listened some. I wish now I had listened more...

So, for that few hundred dollars, we would have TONS of fireworks. Keith would be able to put on a really nice show and satisfy his need to blow things up. ;-)

July 4, 2009 was the first year that Keith could not blow up fireworks. My mom and Nick shot off the best of the best of Keith's collection, while Keith and I sat on the porch, holding hands, and the oxygen generator humming in the background. All the while KNOWING that THIS was HIS LAST FAVORITE holiday.

Keith died on July 7, 2009.

July 4, 2010 the kids and I went out to my mom's house. We did the cookout. We shot fireworks. She helped Nick again and I helped a little. Her neighbor helped Nick too. We finished off the best of the best of Keith's collection. I cried. The close of the first year without Keith was closing in upon

July 4, 2011 is here. I took Nick to buy fireworks yesterday. We don't have any of his dad's best of the best left. Nick really wants to put on a show...just like his dad. So, we go into a large fireworks store. I don't have enough of a clue to know what the best deal for the money is. Again...I wish I had paid more attention. A really nice man came up and asked if we needed help. I said yes and told him what we were looking for. He worked really hard to give me the best deal for my money. I didn't spend the money that Keith always did, but I don't have it to spend now either.

Nick is thrilled with what I bought yesterday. He can't wait until we go out to Mom's house this afternoon for a cookout and then fireworks. Nick is ready to see what we bought. He is ready to step into the shoes his dad left behind. I'm not ready to let Nick step into the role of fireworks boss. I'm probably going to have to man up and help fill the role of teaching Nick the in's and out's of blowing things up. I don't like blowing things up...The things we do for love.

I wish you all a very, blessed, happy and safe July 4th!

As always, we remain...

In His Grip!