Sunday, January 30, 2011

Update on Nick 1/27/11

Nick and I went to Birmingham on Thursday, Jan 27 for his second round of chemotherapy.

The checkup with the oncologist was fine. The doctor said that Nick's spleen felt like it had moved back up some, which is good. That means the swelling caused by the cancer is likely going down.

Nick's IGG level went way down again. That is likely due to the chemo. To counteract that effect, Nick will be receiving IVIG every three weeks. He has been getting IVIG every four weeks up until now. The timing of that means that Nick will be getting IVIG with every chemo treatment. That also means extra long days in clinic.

The next visit to Birmingham will be on Feb 17. Nick will be having CT scans to check to see if the chemo is working. The treatment plan really won't change a lot as a result of the scans. The oncologist said that he will continue with the same treatment plan unless there is a dramatic progression of the cancer (major growth). He said as long as there is some improvement (shrinkage of cancer) or evidence of stable disease (no change), he will keep Nick on the same chemo regimen.

Nick handled the chemo and mega dose IVIG infusions well Thursday. It was a VERY long day. We arrived at 8 AM and didn't leave until 5:30 PM. We finally got home between 7:30 and 8:00 PM.

Nick was sick some during the night Thursday night, even with nausea medicine. He didn't go to school first thing Friday morning, but after another dose of nausea medicine and some stomach friendly food he was able to go. I will be honest and say that I really wanted him to stay home, but he was ready for some normalcy. So...I let him go to school.

The doctor had told me, with the addition of the mega dose IVIG to the chemo, Nick might have more side effects than he had with the last dose of chemo. He did. Nick has also experienced more tiredness this time. It doesn't take a lot for Nick's energy to be depleted.

Nick spent the day yesterday outside enjoying the beautiful weather for a little while. The rest of the time, he was resting and watching TV. Today will likely be about the same. I am trying to get him to rest as much as I can so that he will feel better during the week. Of course, I have to do that without him knowing what I am doing.

I am sorry it has taken me so long to get this update out. I have been up against my first deadline with the class I am taking this semester. Late last night, I finally got all of the assignments submitted that were required before I take the test. The test is due by midnight Monday. It's a one shot deal timed deal, so I am going to fit in some more studying before I take it. I just don't have a lot of time left... There are times when I wonder if going back to college after almost 17 years of being out was the brightest idea.

Thank you for continuing to pray us through this cancer journey. It has been a long, long journey and there doesn't seem to be an end in sight.

One very specific prayer request is to please pray that Nick does not lose his hair. For those who were here praying us through this 4 years ago, you may remember that was a request then too. I am convinced that we all prayed Nick's hair in. It started coming out, I asked for prayer, and the hair stopped falling out. Well, Nick's hair has just started to fall out again. It's something he isn't talking about very much, but I know that it bothers him.

I realize that it is just hair, but for a 16 year old boy it's different than an adult losing hair. Anyone that has had hair loss due to cancer, young or old, knows the emotional effects that hair loss can have. Nick has certainly had more than his share.

So...calling all prayer warriors: Please pray this child's hair in.

There are many other prayer requests. Everything from complete healing, to lessened side effects, to keeping up with school work, to staying well when his blood counts go way down this coming week. I'm sure I am leaving something out.

Please pray as you feel led. Pray for Kacie, as this is hard on her too. Pray for me. I don't feel strong enough to handle this as a widowed parent.

Trying to remain...

In His Grip,

Saturday, January 15, 2011


I'm probably not going to be posting much other than the updates on Nick for a while.

I have started and stopped several posts. I just can't seem to talk or write about what is going on with me right now.

I am talking with MLC and a few very close friends. I did not expect that everything happening lately would cause such a flood of grief, flare ups of the depression and post traumatic stress disorder, and the never ending feeling of being exhausted.

I'm a mess emotionally right now, but I am trying desperately to find some equal footing.

Thank you for continuing to follow us and pray for us. Please continue.

Trying to remember that we are...

In His Grip,

Saturday, January 8, 2011

Life yesterday and today

I'm not going into a lot of detail about everything right now. I am simply to raw emotionally.

I am going to say that Nick is feeling MUCH better today than he was yesterday.

I am so glad that he is behaving more like himself.

Yesterday, life was not fun. The chemotherapy was taking it's toll on Nick's body. He didn't feel good. He wasn't hungry. Nothing tasted good. All he wanted to do was lay around. He wasn't even really interested in playing with all of his techno toys. He just laid around.

I was able to get him to eat a few crackers with cheese, a small amount of mashed potatoes, a Popsicle, and some toast. That's it...ALL day. Thankfully, I didn't have any trouble getting him to drink fluids. That is one of the main things that the oncologist wanted Nick to really focus on. One of the chemo meds can harm the bladder and kidneys. Nick's got to drink plenty to flush all the chemo out of his body.

Today, life has been better. Nick has eaten three meals today. It hasn't been his normal amount of food and there has been an issue with a few things not tasting right. He is eating though.

Today, I haven't given Nick ANY of the nausea medicine. It's at the ready if it's needed.

Today, Nick felt like getting out and running errands with me. We came home after running all sorts of errands, and he wasn't worn out.

It's nearly 7:00PM and he hasn't even mentioned that he's tired or feels bad.

I am really glad that Nick feels better today. Yesterday and Thursday were so very difficult.

I am thankful that today has been a different day.

Friday, January 7, 2011

Update on Nick 1/7/11

Yesterday was a really tough day, both emotionally and physically.

The CT scans showed that the cancer in Nick's lower abdominal/pelvic area has gotten larger. It is also pressing against the bladder. The scans also showed that the cancer has spread to Nick's spleen.

The part about the pressing against the bladder surprised me, but the spread to the spleen did not. That spread is likely what has been causing the fevers at night during this past month.

The oncologist decided that it was in Nick's best interest to go forward with beginning chemotherapy today. Nick was okay with that. The chemo regimen that the doctor decided on is almost exactly the same one from four years ago. The exception is the chemo that works to eradicate the EBV is not being used. The reason for that is the EBV is not a huge presence right now. It's in Nick's body, but it isn't attached to the right kinds of cells for that chemo medicine to work.

Nick is taking three chemo drugs. Two of them are IV infusions. The third one is prednisone, and Nick will be taking that at home...50 mg/two times a day for 5 days. The prednisone portion will be repeated with each IV infusion of the other chemo drugs.

For now, we will be returning to Birmingham in three weeks for the next chemo treatment. After that, the doctor wants to do CT scans again to check to see if the chemo has had any effect on the cancer.

If there hasn't been any improvement, the plan will be reviewed and changes will be discussed.

I don't even want to think about the other options right now. It's just too overwhelming.

Nick is feeling so so. The nausea is under control for the time being. I am using the theory that nausea does not need to be chased. Take care of it before it takes care of you. We came home with two medications specifically for nausea.

Nick is mainly very tired. He has spent the evening resting yesterday. He isn't up to going to school this morning. He slept well last night, but is still feeling pretty tired. If he gets to feeling better, I'll take him to school. For now though, he is camped out on the couch resting.

Kacie is hanging in there. It's really tough on her right now too.

I'm...I don't know what words to use to describe how I am. There are just too many that apply.

Please continue to pray for us all.

I can't even begin to know what to ask for in prayer requests.

In His Grip,
Kristy Baxley