Monday, August 15, 2011

Update on Nick Baxley 8/15/11

I apologize for the delay in letting y’all know how Friday’s chemo went. The weekend was very hectic trying to get things ready for the first day of school today.

Nick handled the “new” chemo pretty well...mostly.

The oncologist decided to reduce the dosage from 1500 mg down to 1000 mg. He really wanted to keep from having to give Nick more steroids.

Nick did very well, until the very end of the chemo. Literally, the IV bag was empty and the last little bit of chemo was going in when he began to react.

The reaction really only showed up in Nick’s blood pressure. The doctor was hoping that since the reaction came when the chemo was finishing Nick’s body would be able to recover without any intervention.

After about 15 minutes, Nick’s blood pressure was still high. The doctor ended up deciding to give Nick more steroids so that the reaction would stop. It did. I didn’t have to give Nick any more Benadryl once we were home. I did have to give some more steroids, but not a lot.

The oncologist has decided to stop the “new” chemo for now. I don’t know if it is completely off the table, but Nick is NOT getting the chemo this week.

I have to say that I am relieved. More than relieved really.

We will go back to Birmingham on August 31. Nick is scheduled for CT scans to see what this cancer is doing. He is also scheduled for the old chemo and IVIG.

Please pray as God leads.

We really need to see God move right now.

In His Grip,

Kristy Baxley

Wednesday, August 10, 2011

Update on Nick Baxley 8/10/11

Hi All!

We were back at Children’s Hospital today for the “old” chemo and IVIG. I am very thankful that Nick handled all of the chemo and IVIG very well today. He did not react at all to the IVIG. Even though there is a risk of a reaction with the IVIG, Nick hasn’t had a reaction to this in several years.

I was concerned that he might react today simply because of the reaction that Nick had to the “new” chemo 10 days ago.

Everything went very well though and for that I praise God!

There isn’t much else to report from today. Nick’s labs were good. There still isn’t any news from the bone marrow transplant team. Maybe we will know something when we go back on Friday for the “new” chemo.

The oncologist did mention today that he may decide to stop the “new” chemo after Friday. He is concerned about the way Nick’s body is handling the chemo and the extra steroids.

Certainly lots to think and pray about...

Friday will likely be another very long day. The doctor and nurses are already working on an action plan on how to increase Nick’s rate per hour and keep the reaction to a minimum.

To say that I am anxious is an understatement.

Please pray.

In His Grip,

Kristy Baxley

Saturday, August 6, 2011

Changes, changes, and more changes

It is certainly an understatement that my family has been through a lot of change during the last several months...uh, years. I can't believe we have begun the journey of our third year without Keith!!!

One of the biggest changes in our home has been in the last couple of weeks. I decided for many reasons to go ahead and get some work done on the inside of the house. These are all changes that Keith and I talked about doing, but never got around to. My bedroom has been redone. Nick's room is redone. Kacie's room is almost finished.

Her bedroom is what led me to write tonight. I let the kids pick out the new color/theme for their rooms. Nick chose Alabama Crimson Tide. No surprised there. He has one wall that is crimson red. It is the wall where his closet is at so it's only an accent type thing. The other three walls are gray. The trim is white. He already had Alabama bedding and other stuff. He also has the wonderful gift of framed Crimson Tide art work. His bedroom is finished and it is AWESOME!!!! He is thrilled.

Kacie chose the color Sassy Lilac. It is definitely in the purple family. It is a totally preteen girl color. Today was paint Kacie's room day. I haven't had any sadness painting...until today. When I began working in Nick's room, I was remembering when I painted it the first time. Nick was five or six. I had no grief issues. None. When I woke up this morning, I was immediately met with some sadness. Going along with my tools for grief recovery, I thought for a minute about why I was sad. I realized that today I would be painting over the "baby" paint that Keith put on while I was expecting Kacie. Keith and a family friend painted that room. We decided on light green because we didn't know if the baby was a Kacie or a Christopher. I was banned from the room. No painting for the pregnant lady.

This morning I was sad to be painting over something that Keith did with such love for not only this little life, but out of love for me. It was our first place to live that we could paint the walls. It was the first room in this house to be painted. I wanted it to be a nursery. He made that happen.

I let myself feel sad about letting that go. I still have the memories. I also have a baby that was a Kacie and is now 11 1/2 years old. She is starting middle school in about 9 days. She needs to have a room that is no longer a nursery color. I realized that this painting would have been done if Keith were alive and well.

I mainly realized that this was another necessary change for the three of us to continue on through this phase of our life without Keith.

So...I got out of bed and got started on transforming Kacie's room. My mom came to help me. We knocked it out in just a few hours.

Kacie's room looks great! Once the new floor is down and the furniture rearranged, it will look even better.

The smile on her face when she saw the finished walls was worth every thing! She is so excited!

I am loving the changes I've made in my bedroom. The walls are a subtle lilac. I know, us girls have a thing for purple! I've accented with eggplant. It's very soothing. I love it.

Life is so full of changes: from kids growing up to losing a spouse and everything in between.

Change is necessary. Change is inevitable. Sometimes, change is even good.

Tuesday, August 2, 2011

Update on Nick Baxley 8/2/11

We were back in Birmingham for the second dose of the new chemo this past Friday, 7/29.

The chemo dose was double from the first dose last week. This round, while still given slowly, was given at a rate that was doubled as well. Last week the rate was 12.5 ml/hour and increased by 12.5 ml every 30 minutes until a maximum rate of 100 ml/hour was reached. This week, the rate was 25 ml/hour and increased by 25 ml every 30 minutes until the maximum rate of 100 ml/hour was reached.

The rates per hour are done this slowly in order to help keep any kind of reaction to this chemo from happening. Recall that last week, Nick had no reaction at all.

I was nervous going into this round of chemo since everything was doubled.

Nick handled the increases to his maximum rate very well. He even handled the first hour at the full maximum rate very well. It was into the second hour of receiving the chemo at the maximum rate that things began to get “interesting”.

At this point, Nick was into the 4th total hour of receiving the chemo, but it was only the 2nd hour of running full force.

Nick began to have a reaction.

The oncologist and the nurses said it was a mild one, but from my point of view...I really don’t want to see anything worse. This was enough.

What did the reaction look like? Well, it started with Nick sweating. Then his blood pressure got really high. His pulse rate got really high. He also started running a fever. His breathing became rapid too. He also went white as a sheet.

The nurse immediately stopped the medicine and began the process of stabilizing Nick. The oncologist came right over and began checking Nick over. Another big dose of IV steroids was given. Nick had already had some as a pre-chemo dose, along with 50 mg of IV Benadryl and 500 mg of Tylenol. Each of these medicines are given before the chemo is started to help prevent a reaction.

Nick recovered very quickly just with the chemo being stopped. Once the extra steroids were given, the chemo had to be started back.

I’m not going to lie...I did not want them to start it back. I was scared. Kacie was crying and scared. I was trying to calm her down, keep an eye on Nick, stay out of the way, and NOT let them see how scared I was. I did not want to start this chemo back up again...

We did though. The chemo can’t work if it isn’t given a chance. The nurse explained to me that while the reaction looked scary, it really wasn’t that serious. It was actually a mild reaction and since Nick had been given more steroids, it should be okay for us to keep going with the chemo.

So...I took a deep breath and gave my consent.

Nick did pretty well for about an hour. Then his blood pressure and heart rate started bouncing around again. This continued until a little after 5:00, when Nick’s blood pressure reached the highest for the day. The nurse called the doctor to come in. He decided that Nick had been through enough and had gotten most of the chemo. We could stop.

Nick had been receiving this chemo for a little more than 7 hours at this point.

We were allowed to be discharged to come home. Nick’s vital signs were still on the high side, but getting progressively better the longer the chemo was turned off. We did have to come home with some additional high dose steroids and some more Benadryl before bedtime. By the time the day was finished, Nick had been given about 350 mg of steroids and about 87.5 mg of Benadryl. That’s a whole bunch of medication folks!!!

The doctor finally decided on Nick’s treatment schedule. We go back on Wednesday, August 10 for the “old” chemo and IVIG. Then we return on Friday, August 12 for the “new” chemo. We return again on Friday, August 19 for another dose of the “new” chemo.

So far there isn’t any news about the bone marrow testing. I’ll let you know when I know something.

The doctor probably won’t do any CT scans until September, unless Nick begins to show signs of the cancer getting worse.

Pray as the Lord leads.

I’m more stressed than I have been in a very long time. This is very hard on all of us. Nick is taking it in stride, as is his way. Kacie is very worried about her brother. I’m trying to hold it all together, but I’m tired mentally, physically, and emotionally. I’m having some issues with the similarities of what Nick is going through to what Keith went through before he died. Please pray that I can get my head straightened out.

Trying to remember that we remain...

In His Grip,

Kristy Baxley